Monday 31 October 2016

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...
Beth x

You can follow me on Twitter: @bethyb1886


Monday 17 October 2016

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...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 3 October 2016

Deprivation and dementia

When you consider the experience of living with dementia, I think it’s fair to say that if you are a wealthy person living in a leafy, affluent, secure location your experience of life with dementia will be different to a person from a deprived inner-city area with no money (and possibly debt), living in unsuitable housing conditions in an area rife with crime. The basics of eating well, keeping warm and being able to get out and about when you are living in deprivation are likely to be challenging enough, before you even think about throwing dementia into the mix.

People from socio-economically deprived backgrounds are at increased risk of other health problems, both physical and mental, that may make them more susceptible to developing dementia (for example cardiovascular disease that could lead to vascular dementia), and are more likely to experience difficulties taking care of themselves, putting them at higher risk of infections, falls and problems associated with managing other conditions, for example diabetes.

They are also more likely to be diagnosed later when their dementia symptoms are more advanced, and often at a crisis point, most notably as a result of an emergency admission to hospital. This is due to lots of factors, but key ones are a lack of information about dementia symptoms and difficulty accessing services. People experiencing socio-economic deprivation are often more isolated than people from more affluent backgrounds, and may feel public services are judgmental rather than supportive towards them due to their circumstances.

Further down the line, there are also likely to be issues around accessing social care, for example homecare, which may mean a person struggles on at home alone for longer than they should, ending up reaching a crisis point as a result. To an extent this is true regardless of your circumstances, but it can be a particularly acute problem for people from deprived areas. If the person with dementia has a family carer, the carer is also likely to experience a far more difficult caring role due to lack of identification, information and support. Just accessing online resources, like this blog, won’t be possible if you can’t afford a device and an internet connection at home, or are unable to get to a library to use facilities there.

Out of sight, out of mind is often how socio-economically deprived people are seen by others and treated by society as a whole. Living with dementia is unexplainably tough for anyone, but much more difficult if you can’t see your GP when you need to, can’t access the wealth of information available online, don’t know how to and can’t afford to make your home environment more dementia-friendly (with signage, lighting and other assistive products), and can’t manage other health conditions, eat well and exercise your body, physically and mentally, to help yourself to live as well as possible with dementia.

Symptomatically, there are other important considerations too. Aside from the focus on memory problems so associated with dementia, one of the key issues a person with dementia can experience is a difficulty looking after their home and themselves. If your home is damp, poorly maintained and without adequate facilities to cook and wash, not having the cognitive ability to recognise this and take action can have significant health consequences, and could even result in death. Equally, living in a deprived area could put a person with dementia more at risk of crime if they are seen as a ‘soft target’ – another reason to want to hide away from others, pushing a person into an even more isolated life.

Taking all of these factors into account, the ramifications of socio-economic deprivation on a person with dementia are widespread and extremely serious . Yet these issues are largely ignored. Maybe this is because poverty is something that has always lurked in the shadows of society, or maybe it’s because there are just too many factors that need addressing when you consider how you might improve the life of a person with dementia who is living in deprivation – it’s not just about their health, it's about their housing, access to services, financial situation and even their education.

For commentators, it’s easy to turn your back. A person who is newly diagnosed and living in a damp, cockroach infested high-rise, inner-city flat, without enough hot water for a shower or to clean their clothes, who lives on the breadline (or below it), just isn’t as attractive as interviewing a person with dementia who lives in a comfortable semi in suburbia, with nice home furnishings and family photos on the sideboard.

Yet poverty plus dementia puts the ‘Big D’ into a totally different focus. You are unlikely to be able to live well with dementia, and will probably die younger than a person of the same age with the same type of dementia who has a more affluent life. End of life care in deprived circumstances is also likely to be far removed from what anyone might call a ‘good death’.

Ultimately, you could claim that in these austere times such disadvantage is inevitable. Harsh critics might even argue if it really matters: after all, living with dementia can be unmentionably tough no matter what your circumstances. But when I look back over my dad’s 19 years with dementia, I know we had a better experience than many people precisely because of living in a more affluent and secure part of the UK, with our own personal resources as well as the education and ability to access care and support.

For all of that I am very grateful, but imagining us in deprived circumstances puts a whole new outlook on everything we went through. Austerity shouldn’t be a watchword for neglect. Nor should your living circumstances determine how dementia affects you. Equality for all is a nice catchphrase, but this is one of many areas in dementia care and support where it is sorely lacking.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886