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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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.

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...

You can follow me on Twitter: @bethyb1886

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