Missing the morning chorus - Life with hearing loss

Hearing is one of the senses that I believe many people take for granted. I think the general assumption most of us make is that we are hearing everything, or at least everything we think we need to hear, and that hearing loss is something that hasn’t happened to us.

I had a bit of a wakeup call regarding my hearing earlier this year. I first noticed it when I was struggling to hear our baby crying upstairs, and it scared me – was I losing my hearing? As it turned out my hearing ‘loss’ was due to a build-up of wax, a common problem that anyone can be affected by, but it did make me think, particularly about how older people who are living with age-related hearing loss might experience the world around them.

The problem with age-related hearing loss, and the reason so many people struggle to recognise hearing loss as they get older, is because for the vast majority of individuals affected it is such a slow deterioration that they just don’t realise they are starting to miss parts of sounds. As time goes on it becomes more widespread, but the person is so used to missing sounds they just don’t realise that the richness of the audible world around them is slowly diminishing.

This has been of particular interest to me lately, as my mum has recently been fitted with hearing aids. I accompanied mum to her first appointment, and the result of her hearing loss hit me hard when the audiologist was playing birdsong to my mum and she couldn’t hear it (without hearing aids), but I could hear it clearly. Imagine a world where you don’t hear the morning chorus?

So if my otherwise fit and healthy 70+ year-old mum can need hearing aids, how many other people are likely to? The answer is probably quite a few, and certainly more people than those who are currently fitted with hearing aids. Sadly, hearing loss remains stigmatised in a way that correcting your eyesight isn’t. Wearing glasses, or contact lenses, is a way of life for many people I know, but suggest wearing a hearing aid to a person who doesn’t believe that they have hearing loss and you may as well be suggesting they have giant comic ears mounted on the side of their head.

Many misconceptions contribute to the stigma associated with hearing loss, including:

·        Feeling like a failure. It’s not a failure on the part of the individual that they aren’t hearing as well as they used to – for most people, age-related hearing loss is simply about the fine workings of the ear beginning to wear out, purely because they’ve been used so much. A sign of a life well-lived I’d say.

·        Fear of being ‘tested’. Having a hearing test is no different to a sight test in terms of the fact that there is no ‘right’ and ‘wrong’. It’s a healthcare assessment that is designed to diagnose any problems you’re having.

·        Audiologists want to sell you something you don’t need. A professional audiologist is there to help – if you don’t have hearing loss, or hearing aids won’t help you, then they should be honest about that and if they aren’t, seek a second opinion.

 

One of the biggest problems with gradual age-related hearing loss is that it’s often those around the person with hearing loss who become very frustrated with the person’s inability to hear things that others are hearing easily. Any child with a parent who has hearing loss will be tempted to resort to nagging them to go to an audiologist, I did, but educating yourself (something else I did) is much more helpful when creating a more constructive conversation.

The most extreme example of the consequences of age-related hearing loss that I’ve encountered concerned a person who went to see their doctor because their family believed that they were developing dementia. On putting the person through an audible memory test, the person scored so badly that the doctor also believed that they had dementia. It was only when the person’s hearing loss was discovered, corrected, and they were re-tested that it became clear that they hadn’t heard half of the memory test and therefore could never have answered correctly.

Hearing loss can be very isolating, particularly in social situations, sometimes making a person avoid going out if others are getting irritable with them. It can ruin the enjoyment of TV, the radio, going to the cinema and attending concerts: Imagine only hearing parts of your favourite piece of music. And as I’ve already mentioned those subtle sounds of everyday life, like birdsong, can be lost, leaving a person’s world far less rich than it might otherwise be.

There are also problems when sounds become distorted, or key sounds that a person needs to react to urgently are lost, like the sound of an upcoming car when you’re crossing the road. Untreated hearing loss is even being associated with an increased risk of dementia, with research presented in the USA earlier this year looking into the findings of physician Frank Lin.

Hearing loss, like other sensory losses, for a person who is already living with dementia can cause additional problems in providing that person with care and support. If an individual can't hear what you're saying, or enjoy things like music, then it's likely to severely impact upon their life. Even if the person's hearing loss has been diagnosed and treated (with hearing aids) years before they developed dementia, it's a well-known problem that a person may refuse to wear hearing aids, alongside glasses and dentures, as their dementia advances. My dad, whilst he had perfect hearing, refused to wear his glasses and dentures for the majority of his years with dementia.

If things had worked out differently for my dad and he'd had hearing problems, I'd have probably been the first person trying to persuade him to have a hearing test. So if you know someone whose hearing isn't quite what it was, or you are that person, have a test and find out. The miracle of hearing is too good to only hear half of life.

Until next time...

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Do something new... and pamper

Welcome to the second of my seven blog posts for UK Dementia Awareness Week 2015.

This year's Dementia Awareness Week centres around the theme of doing something new for people with dementia, under the mantra that ‘Life doesn’t have to end when dementia begins’. For many people living with dementia in care homes, however, a lack of opportunities to have meaningful occupation and activity, or even just enjoy the simple pleasures that many of us take for granted, can lead to life feeling like it really has ended.

Over this Dementia Awareness Week (DAW2015) I want to look at some of the positive things relatives and staff can do to enhance the lived experience of people with dementia in care homes. They may be new things, or they may be old favourites, but they all share in the ability to turn a boring day into something a little bit more special.

Day 2: Pampering

Personal care is often a very task-orientated activity that only allows for the bare essentials of washing, dressing and being helped to the toilet. When time allows, care staff are expected to ensure that fingernails are cut and that people who want to see the hairdresser, barber or chiropodist are enabled to, but often that is as far as ‘pampering’ goes.

There is so much more that we can do to make people feel special, however. Small touches like a favourite scent in the bath, a hand or foot massage, painting nails or applying make-up for ladies who like that look, giving ladies who’ve had their hair washed a lovely blow dry (including putting a few rollers in for those who would enjoy that) or ensuring gentlemen have their facial hair shaved or trimmed the way they like it can all make a difference to how a person feels.

Many of these actions do ask for a time commitment, particularly if you’re going to make them luxurious experiences, but that one-to-one time is often vital for people living with dementia in a care home, and there is absolutely no reason why relatives can’t get involved in these activities too – I spent many hours doing my dad’s nails, cutting his hair and giving him a shave or a hand massage. Never underestimate the simple happiness and the huge bonding potential of making someone feel just a little bit more special than they did the day before.

Also, remember that pampering can go beyond making the body feel nice and extend to choices of clothing and accessories. The same drab outfits day after day (that are probably wearing away due to extensive high-temperature washing and drying) are likely to dampen anyone’s mood. Why not treat your loved one to a shopping trip, either by going out to the shops or via online or catalogue shopping, or even just jazz up tired outfits with new accessories. If you have the knowledge to turn yourself into a seamstress, you might even be able to remodel hardly-worn outfits, breathing new life into them. Even small details like different buttons, a fabric corsage (no pins!) or some sparkly trimmings can make a big difference to how the person wearing the clothing feels about their appearance. 

More information, tips and advice on pampering can be found in the following D4Dementia blog posts:

Little touches that make a BIG difference: http://d4dementia.blogspot.co.uk/2012/06/little-touches-that-make-big-difference.html

Humanity in care - The role of touch: http://d4dementia.blogspot.co.uk/2014/10/humanity-in-care-role-of-touch.html

A helping hand: http://d4dementia.blogspot.co.uk/2014/11/a-helping-hand.html

Next post on 19 May 2015.
Until then...

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Humanity in care - The role of touch

One of the most controversial elements of care provision is touch. It has a discomfort associated with it for many professionals, and even family members can have deep reservations about touch. It can be associated with abuse, both by ignoring someone's need for a comforting touch or the more commonly made association of inappropriate touch. It is also a topic that us famously reserved Brits don't really like talking about.

Touching another person can happen in a variety of situations and for a multitude of different purposes. It can be the basic things, like a clasp of the hand when you greet someone, a hug, a kiss on the cheek, ruffling hair or brushing against an arm. It can be touch that is necessary to help a person with something, like personal care or eating and drinking. Touch can be used to support, comfort or reassure, but it can also cause alarm or anxiety.

Touch has an important role to play in dementia care for the majority of people who are living with dementia. Understanding the individual preferences of a person around touch is vital to ensure that you don't dismiss a person who seeks comfort, or distress a person who feels that touching them is an invasion of their personal space.

Against this backdrop, why do we have such a deeply uneasy relationship with touch, given that it is a natural part of life from the moment we are born?

For professionals, a lot of the issues around touch are about what is appropriate - there is an underlying fear that any intervention must be proportional for a particular situation and justifiable to anyone who may observe and question. Yes, touch is sometimes associated with inappropriate behaviour and criminal acts, but those incidents are few in comparison to the vast majority of instances where touch is giving support, comfort and putting humanity into care.

Occasionally, issues around touch can be rooted in fear about older people and advanced dementia. A good example comes from a particular interaction between my dad and an out-of-hours doctor. It was late on a Saturday evening when the doctor called to see my dad for a suspected chest infection. During the necessary examination, the doctor refused to touch my dad, instead issuing instructions to remove clothing and position dad in a certain way. I was appalled - the lack of warmth in that doctor's approach betrayed everything that was wrong with his bedside manner.

Fear of touch can also come from concerns about protocols. I remember seeing care workers walking past and ignoring a lady who was crying out to see her husband. When I asked why they were not comforting her, they said they weren't allowed to. I was horrified and couldn’t just walk on by, so I stopped and put my arm around the lady. We sat there for a while, she was crying, I was trying to be soothing. I can't prove my intervention helped, but I can say that if I had been that lady I would have felt considerably less alone as a result of a comforting touch.

Sitting holding my dad's hand was a standard element of all the hours we spent together, as was stroking his head or his arms. However, not all family members feel comfortable about touching their relatives in this way. Visiting a loved one with dementia can bring with it a raft of emotions, and as much as we don't like to talk about some of the more uncomfortable aspects, for some people this can include feelings of revulsion, of not wanting to become 'dirty' or 'catch' something. In short, not touching can be method of protection for some individuals.

At the other end of the scale are family carers, who find themselves thrown into an unfamiliar role that is inevitably going to involve a lot of touch. Having to cope with an increasing need from their loved one for help with personal care can be hugely difficult. Any care that involves touching intimate areas, such as changing incontinence pads or bathing, can be especially problematic, and even more so when the relationship is between a child and a parent, and where the two people involved are of the opposite sex.

So how do we become more comfortable about touch, and the vital role it plays in caring for people with dementia? 

A significant part of the answer to this lies within ourselves. Confronting our own reservations about touch is the first step towards feeling more comfortable about it. Reservations in relation to touching people with dementia can often be rooted in stigma - one of the most astonishing things I ever heard was the idea that somehow you might 'catch' dementia from touching someone who is living with it. Perhaps that is what that out-of-hours doctor was afraid of.

As a family member visiting a relative who is living with dementia, engaging in practical activities that may naturally lead to an element of touch - in terms of guiding or assisting the person with dementia - can help to make touch feel like the normal part of life that it is. If you are a family carer having to undertake increasingly personal touch-related care, knowing that you are doing things in the right way (for example techniques for moving and handling, washing and dressing etc) can often help to reassure the carer. That guidance could come from a district nurse or other qualified health or social care professional.

For professionals, I think touch will inevitably remain a difficult area. Some people can naturally incorporate touch into their care provision, and so long as that is done in a way that the individual receiving care is comfortable with, then it is a win-win for all. Learning to gauge that comfort level takes a degree of skill and experience, and guidance from other members of the team.

Most importantly though, it is about communication with the person you are caring for and observation of their needs and reactions. It's about being adaptable, and not assuming that what was ok yesterday is ok today or tomorrow. It is also about establishing relationships through continuity of care and reflecting on what is going well and what could be done better. 

In the end, touch is a human reaction, and hugely associated with our emotions. It is part of who we are, and as such it has to be part of the care we provide.

Until next time...

You can follow me on Twitter: @bethyb1886

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Lessons from my virtual world

Earlier this month I experienced the Virtual Dementia Tour for the first time. Along with 24 people who work in social care, we went through the tour in pairs, with most of us then observing others on the tour. The results weren’t exactly surprising to me – we all experienced ‘dementia’ differently, and were united in feeling very unnerved by the realism of the tour.

Ours was just a snapshot of this product, and yet for many people it was a very long 10 minutes. I for one hugely disliked the constant noises I had to listen to and the way in which my senses became distorted. Reflecting afterwards, however, has produced perhaps even greater insight than those 10 minutes of ‘living with dementia’.

My naturally practical side immediately kicked in once I began the tour; I was determined to illuminate my new reality and then find a task to do. I couldn't hear the instructions at the start of the tour due to the noises being played into my ears, so I decided to set about accomplishing the only task I felt fit to perform, regardless of whether that was the task I was actually charged with completing.

Thus I began to fold clothing and linens, putting them into relatively neat piles, a task I regularly do at home so it came naturally to me. In the feedback I had about my tour, I am reported to have stomped around (I’ve been accused of doing that thundering up and down the stairs at home), made small noises (not uncommon for me, I’m the master of a whole range of small noises to voice everything from irritation to happiness), sniffed a lot (I’d only just got over a heavy cold), jumped at the loud noises (very common for me) and been territorial over the folding (again not surprising, I’m a bit of a perfectionist).

So, despite experiencing some very unpleasant sensory disturbance, I drew upon many of my natural personality traits and gravitated towards familiar tasks in order to cope, and apparently once I became immersed in the folding I was significantly calmer. So what do we learn from this?

Lesson 1) People with dementia are still people, they are not a disease or a raft of symptoms – their personality, likes and dislikes remain with them.

Lesson 2) People with dementia can still achieve things, and they want to achieve things.

During the tour, I did something that the trainer said only one other person in the UK had done since they had been delivering the training over here. I won’t tell you what it was in case you are planning on taking the tour, but in conversation with the social care workers afterwards, the feeling seemed to be that I’d acted differently to most people precisely because I’m not a professionally trained social care worker.

Lesson 3) Does the way in which we educate our professionals really reflect lived experience? Personal experience of dementia is invaluable in helping to produce care and support that is actually caring and supportive for people with dementia.

The fact that so many of the people on the tour found it eye-opening was a great testimony to the effectiveness of the product, but it does make you wonder how many other social care professionals lack insight into dementia and yet deliver frontline care and support every day.

Interestingly for me the tour, rather than being an insightful experience, was actually a reassuring confirmation that everything I’d believed in for my dad’s care, and that I now champion through my work, is very much best practice. Examples of this would be:

Lesson 4) Constant background noise, especially from TV’s and technology, is very unhelpful for making people with dementia feel calm and relaxed.

Lesson 5) Giving a stream of instructions to a person with dementia isn’t likely to produce a positive result, and you can apply that to constant direct questioning too.

Lesson 6) Anyone is capable of behaviour not normally associated with them when they are living with dementia, including swearing or aggression. Don’t take it personally.

Lesson 7) Dementia naturally produces a different reality. We should not try to correct that but instead embrace it.

Lesson 8) People with dementia shouldn’t be restricted any more than is absolutely necessary for their safety and wellbeing. We must avoid being risk adverse, and care should never be controlling or about imposing our will on the person with dementia.

Lesson 9) Dementia is a serious, multi-faceted cognitive disease that could leave anyone aimlessly searching in a permanently unfamiliar place – we must offer kindness, compassion and support to make that search more bearable. 

Lesson 10) Communal living can be very problematic for people with dementia, and where it is necessary, specialist care is vital.

Lesson 11) We are all different and must be treated as the individuals that we are.

My only real criticism of the tour is that it gives everyone the same experience, the only differentiation is in how individuals behave when subjected to that. So, whilst it undoubtedly gives a great insight into an example of dementia, those taking it must be mindful of the huge variations in the different forms of dementia, and how different symptoms can be magnified or reduced for each individual.

Lesson 12) Many of the sensory issues you go through on the tour are related to what you can see and hear. It should be remembered that some people will live with dementia but have very good eyesight and hearing, whilst others may be completely blind and deaf (as I wrote about here).

Lesson 13) We were all fit and healthy individuals, but people who are living with dementia could have a variety of mobility and health problems that again will affect their individual experience. Consider how problems like immobility, incontinence or dysphagia would greatly affect how a person lives with dementia.

Interestingly, the trainer said that most people completing the pre-tour questionnaire answered yes when questioned about whether people with dementia got the care that they needed. I replied no to that question both before and after the tour. Why?

Lesson 14) Ultimately, however much we think we know about dementia, and however great we think the care is that we are providing, we can always do better.

Until next time...

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A sensory journey

In everyday life we can often take being able to see, hear, smell, taste and touch for granted. Senses give context to the mundane, stir our emotions, affect our body language and have the power to make the ordinary, extraordinary.

Many of us will spend much of our disposable income on making our homes and our lives as appealing for our senses as possible, so it is obvious that applying that same focus to the environments and lives of people with dementia can make a huge difference to the quality and richness they find in each day.

Bland, sterile, faceless environments do not benefit people with dementia. From contrasting colours to calming music or voices, aromas that stir fond memories, favourite foods, and compassionate reassurance to alleviate anger or remove fear, the opportunities to enliven the senses to bring positive therapeutic benefits are extensive, and yet they are often not fully explored.

In some care homes sensory rooms have become very popular, not least because staff who were perhaps sceptical previously see the clear benefits on their residents' moods, emotions and wellbeing. These rooms can have a wonderfully calming effect on people who are experiencing agitation due to their dementia, and are as valuable as other standalone therapies like music (that I wrote about here) art, gardening or exercise.

Soft, possibly coloured lighting, tactile fabrics, comfy chairs, delicate aromas, relaxing sounds and, crucially, the opportunity to put the person with dementia in charge of what they do by making the room safe for them to move around and try different sensations, is a very enriching activity, particularly when enjoyed with loved ones, offering the chance for renewed family interaction and exploration.

I have visited care homes where they have interpreted the idea of sensory areas in many different ways, for example through having daylight rooms, beach rooms (complete with sand and gentle wave sounds), and sensory gardens with waterfalls and pathways that have been planted up with tactile plants and scented flowers. Conversely I have also walked down many corridors that offer no stimulation, with rooms leading off of them that are virtually identical, and people sat blankly staring into the distance while others are agitated or wandering around a seemingly never ending space that offers them nothing for their wellbeing. The difference in these atmospheres is what separates person-centred care from conveyor-belt care.

For our part, we tried to make my dad’s room a place of sensory delight. For dad, a particularly successful therapy was that of touch. Having been an active farmer all his life, his hands were desperate to be busy again, and without something to hold he was at a loss with that to do with them. Life-like miniature versions of farm animals were dad’s salvation; their soft faux-fur was perfect to stroke, and he could hold one under each arm to cuddle.

This approach was successful because not only did it solve the idle hands problem that dad was experiencing, it solved it by tapping into the touch sensation to calm and relax him. As in all things dementia related, personalisation is the key to therapeutic interventions, and this becomes even more important when the person with dementia has limited or completely non-existent use of one of more of their senses.

Dementia can create huge isolation by its very nature of putting the person with it into their own world that none of us can truly be a part of, but when someone cannot see or hear what is happening to them, who the people are around them and why they are being offered or given particular care, the world is an altogether more frightening place.

A lot of dementia training focuses on explanation and demonstration, not taking into account what happens if the person with dementia cannot benefit from that. If someone cannot see that a carer is trying to feed them, or cannot hear what the meal is and that it is now time to eat, they are likely to panic. If you were blindfolded, given ear plugs and then had someone jabbing at you with a spoon you would probably panic too. Therefore assessing someone’s sensory abilities, whether that be through checking their hearing, eyesight, ability to respond to taste (sometimes tastes need to be stronger as taste buds become duller) and smell (my father could not remember how to blow his nose for the last few years of his life, meaning that he had a permanently blocked nose and sneezed daily) is extremely important so that when it comes to touch, this is appropriate, expected and welcomed.

Touch is what ultimately brings true compassion, and can, when part of person-centred care, compensate for the deterioration of any of the other senses. Touch reminds us of how we are nurtured from birth, and for someone with dementia, those memories of being protected and loved are very empowering. Dementia is a hard road to travel, but making it a more sensory journey nurtures the person, and if there is one thing we would all like to be able to do for a loved one with dementia it would be to make life just that little bit easier for them.

Until next time...

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