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...

You can follow me on Twitter: @bethyb1886

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Fixing dementia care in hospitals

Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer's Society showing shocking variations in the quality of care being given, prompting the charity to launch their 'Fix Dementia Care' campaign.

Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.

The Freedom of Information requests that provided the substance for the Alzheimer's Society investigation highlighted that people with dementia were:

•    Falling while in hospital

•    Being discharged at night

•    Being marooned in hospital despite their medical treatment having finished 

Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.

 

I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad - these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of 'care' that would leave him upset, disorientated and confused.

 

Being marooned in hospital was also a harsh reality for dad - at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care - a no-win situation for all concerned.

 

Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer's Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs. 

 

Reading this led me to reflect on how my dad might have responded to his hospital experiences. I'm certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly 'fortunate' stay in hospital could I honestly say that dad had a better experience - he had his own room and staff found him a CD player. We brought in CD's for dad and his mood changed completely. Simple stuff, but so effective.

 

Sadly, however, meeting staff who understood dad's needs wasn't the norm. During the latter years of dad's dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a 'mistake' that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn't need and could have shortened his life with an inappropriate dosage.

 

Furthermore, this 'mistake' was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care - without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.

 

Despite the many difficulties we encountered with hospital care, however, I don't want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad's last stay in hospital when he'd been rushed in with an aspiration pneumonia. 

 

His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn't because we were unhappy with his hospital care, but rather that the hospital couldn't offer the homely environment or privacy we felt he needed as his life approached its final stages. 

 

So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.

 

The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn't been well managed, or because they've had a fall in their own home or in a care home.

 

This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable 'thickened' food for him (which in reality was as liquid as the water out of the tap).

 

What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time - prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital. 

 

Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer's Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer's Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.

 

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.