Monday 30 May 2016

Sectioning people with dementia

Over the four years I’ve been writing this blog, I've met or been contacted by many families whose loved ones with dementia have been sectioned (detained in hospital without consent under the Mental Health Act). Sometimes the sectioning has occurred prior to a diagnosis of dementia, with the person then being diagnosed during their period of detention in a secure mental health hospital, and sometimes the sectioning has happened after a diagnosis and while they are living with a form of dementia.

Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.

As we know, people from all walks of life develop dementia, including people with long-term mental health disorders like schizophrenia and bipolar (manic-depression). The addition of a form of dementia for a person with a mental health disorder may result in a particular set of circumstances that makes sectioning necessary.

Equally, we know that dementia can itself cause significant changes in a person's personality, when they have no previous history of mental health illness. If those changes result in a person taking up a dangerous weapon and threatening themselves or others, again sectioning may be the only option.

These are, by any stretch of the imagination, extreme circumstances. They also affect a very, very small proportion of people with dementia. Yet figures published by the Health and Social Care Information Centre on 23rd October 2015, for the year 2014/15, showed that people aged 60 to 89 were most likely to be detained (Sectioned) under the Mental Health Act, with the number of detentions in each of these age groups (60-69, 70-79, 80-89 and 90 or over) all being over 43.0 per 100 people who spent time in hospital.

It would be a reasonable assumption, given that diagnosis of dementia is highest amongst older people, to suggest that dementia was a factor in many of these detentions. The question is, however, was sectioning the best form of care for these individuals? Most people with dementia live with progressive symptoms that cause them various challenges, and which the people around them need to respond to in ways that help to alleviate any distress they are feeling.

Sectioning is not a method of care that is likely to succeed in alleviating distress for the average person, or indeed for anyone bar those experiencing the most extreme symptoms and in the most extreme circumstances. It is most likely to result in a 'chemical cosh' being administered, and often that results in the long-term use of antipsychotic medication that is generally only removed if the person is fortunate enough to come into contact with clinicians and care professionals who have a more progressive outlook.

Fortunate is a word that I shouldn't need to use in relation to dementia care, but that is the harsh reality for some people who are living with dementia and being medicated to 'control' their 'behaviour'. Sectioning for a person with dementia, or someone who is suspected of having dementia, is a blunt tool that is still, in my opinion, used in circumstances that it should never be.

It can be used where healthcare professionals are wrongly assessing a situation, or don't have access to other methods of supporting a person with dementia - for example highly skilled social care that rehabilitates the person in a specialist care home environment that is designed for people with dementia and that provides person-centred, rehabilitative, therapeutic care.

It is sometimes used where a person with dementia is displaying 'challenging behaviour' (a term I dislike immensely) when in reality if their needs were met they wouldn't appear so distressed. In all bar the most extreme circumstances that I talk about above, a person with dementia lashing out isn't a sign that they need to be controlled by the means of a section if they won't 'co-operate' with the authorities.

Other circumstances I’ve heard of where a section has been used include carer burnout, where the family of the person have reached a complete breakdown. It’s pretty obvious, but if we supported family carers better to begin with such a circumstance wouldn’t develop. Another example can be extreme self-neglect, where a person living alone has neglected themselves to such an extent their life is in danger. Again, sectioning here is a bit like shutting the stable door after the horse has bolted. With an earlier, gentler intervention the situation never needs to deteriorate to a point where a section is being considered or used.

I'm not na├»ve; I know that not every person with dementia will avoid spending time in a 'secure unit', much as I would like them to. My father spent one 3 month spell in a 'secure unit' at our local hospital, was medicated and lost half of his body weight, and I don't doubt that some of the people locked in that unit had been sectioned. I just feel that sectioning is the most severe end of mental health care and should be reserved for the extreme circumstances that I detailed above, not as a short cut to ‘dealing’ with a person who has dementia and isn’t ‘conforming’ to what others expect of them.

I dislike immensely the idea of controlling people with dementia, and sectioning effectively does that. Moreover, I question the long-term good it is likely to do. Dependency on medication, the development of a whole host of other health issues as a result, severe deterioration of the person’s dementia, and complete dependency on the health and social care systems for the rest of their life. It’s not a pretty picture.

The solution? That sectioning is seen as being the extreme, last resort event that it should be, rather than a go-to ‘solution’ for ‘problematic cases’. Improvements in awareness and education around dementia, particularly the understanding around the physical changes in the person’s brain. And most importantly, the embracing of person-centred, rehabilitative, therapeutic support, delivered in an environment that enables rather than disables the person with dementia.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 16 May 2016

Why awareness of dementia isn’t enough

Dementia Awareness Week (#DAW2016) is arguably the most dementia-focused week of the year in the UK. It’s a time for launching initiatives, publications, products and services, and for charities, organisations and businesses to raise the profile of their work. Indeed, Dementia Awareness Week was the trigger for me to begin this blog four years ago.

Amongst all of this coverage, the headline message remains fairly consistent: If you think you may have dementia, or are concerned that someone you know might have dementia, please see a GP. In essence that’s a very simple action, but it is bound up in so many other issues, emotions and concerns.

Seeking a diagnosis in 2016

Whilst in the UK we’ve become rather adept at talking about the diagnosis of dementia, or the perceived lack of it (depending on what you believe about prevalence statistics), what we are still very poor in delivering is the holistic package of care and support that should wrap around a person with dementia, and their family, when the time is right for them to seek that assistance.

We wonder why people don’t want to seek a diagnosis like having a diagnosis has become some sort of reward that people should be grateful for, but the reality is very different. Whilst for some people having a diagnosis helps to answer questions about their health that are causing them concern, for those who go undiagnosed, the question is potentially as simple as this: Why would you seek a diagnosis if you don’t feel confident in receiving the aftercare and support you need and deserve?

To find the answer as to why people don’t come forward as soon as they experience symptoms you have to look at three intertwined issues: Awareness, Stigma and Support.


As a country the UK has become one of the leading nations in raising awareness of dementia. Through campaigns, most notably Dementia Friends, myths have been busted – “Dementia is not a natural part of the ageing process” – and it’s safe to say that more people know about the symptoms of dementia than ever before.

Sadly, with awareness also comes an appetite for headlines such as those proclaiming dementia to be the most feared health condition in the UK. For the record, I don’t doubt that it is the most feared health condition, but the problem with fear is it will inevitably put people off from seeking help if they notice dementia symptoms in themselves or a loved one. The more fear is ramped up, the less effective those more measured awareness-raising messages become.


Again, I think a lot has been done to counter stigma, most notably by people who are living with dementia speaking out and joining leading campaigns – not to mention beginning their own campaigns (examples include Dementia Engagement and Empowerment Project and Dementia Alliance International). Their voice is absolutely vital in helping to show that it is possible to live well with dementia, and that a diagnosis doesn’t mean your life is over.
The problem remains, however, that amongst older generations people still associate dementia with outdated ideas about ‘madness’ and asylums, and that is constantly reinforced by stories of bad dementia care homes and home care, poor treatment of people who are living with dementia in hospitals, ‘bed-blocking’, elder abuse, family carers who are unsupported, and a disregard for the end-of-life wishes of people with dementia. Equally, if you are a younger person with symptoms of dementia, you may feel that dementia is only something 'older people get' (a widely-held belief, but of course untrue).
Whilst there are pockets of great practice in supporting people with dementia in the UK, this is confined to a patchy postcode lottery that leaves people with dementia and their families at the whims of local commissioners of health and social care services, and whatever provision is delivered by charities and community interest companies in their locality.
Yes, there is a desire from government for everyone to receive the care and support that is right for their individual circumstances (See the implementation plan for the Prime Minister’s Challenge on Dementia 2020), but the reality is very different. Changing this reality is, for me, the key to making the UK the best country in the world to live with dementia.
Offering a value-added dementia diagnosis
A value-added diagnosis offers cutting edge care and support that is about real choice and control (not just the misguided perception that you have choice and control), occupation and involvement (not tokenistic gestures), refining daily living skills (enabling rather than disabling), making transportation accessible (driving, using public transport and having the confidence to go on holiday and do the things that the person wants to do) and modifying the environment of the person’s home and community (to provide both symptomatic relief for problems like orientation, and also help the person to remain comfortable at home and when out and about).
Finally, every one of these approaches must be personalised and holistic, taking into account individual wishes, wider family circumstances, and any other health conditions the person has now, or may develop in the future.
It’s rehabilitation more than medication (in the absence of more reliable drugs to treat the different forms of dementia). It’s family orientated and far more of a social model than a medical one (doctors  have their role to play, but dementia specialist nurses and OT’s are generally more needed, and the expertise of social care professionals is paramount). And it is never, ever, one size fits all.
Ultimately to deliver this is about prioritisation and funding. But it’s also about belief in dementia care and support that is designed like this. It’s about ditching the old model of dependency and giving up (and I urge you to read Kate Swaffer’s experiences of this) and offering a value-added diagnosis that motivates people to come forward when they have symptoms of dementia.
More than just awareness
It is so much more than just awareness, but in many ways that is what makes it so important. Please use #DAW2016 to spread these messages, but don’t stop when the hashtag is old news. Dementia needs this platform every week – I strongly believe that positive change will continue to evolve, but all of us with a personal and/or professional passion for dementia has to own that change for it to happen.
"Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has." Margaret Mead, American Anthrapologist

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 2 May 2016

Don't let the sun go down on me

Of all the words associated with the various symptoms and effects that dementia can have on a person, 'sundowning' is one of the most curious. It is a word to describe when a person with dementia becomes more active and/or distressed later in day. This activity and/or distress coincides with the light fading as the sun goes down, hence how we arrive at the word 'sundowning'.

At this point I should stress, as I have many times in the past in other blog posts, that I'm not a fan of labelling people with dementia. I no more like the term 'sundowner' than I like 'wanderer' or 'feeder'. Sundowner may also be bracketed with describing a person as 'aggressive', since one of the ways in which a person with dementia may express themselves during a period of sundowning is through physical or verbal interactions that, for them, are the only way they feel they can communicate how they are feeling.

Aggression, as I have written about previously, is always going to be linked somehow to an unmet need, which is true of anything labelled a 'challenging behaviour' (another term I dislike immensely). With this principle in mind, it's vital that we unpick the key elements of 'sundowning' to understand what the person with dementia is experiencing, and why they might react in the way that they are.

The link to the time of day and the levels of natural light is very interesting. It is certainly my experience, and something many people I've spoken to agree with, that any problems or anxieties you may have in your life always seem worse as darkness descends and throughout night time. Even as a child, I would be anxious at night in a way that I would never be when I woke up in the morning. Daylight seems to make us feel more in control of our emotional responses, whereas night time makes us feel more vulnerable.

There are also other important elements at play for a person who is living with dementia. Firstly they may be unsure of the time, so find light fading very confusing and distressing. They may not feel like they have had a 'daytime' at all, so why should the light now be fading and bringing darkness back? The person may feel like they've been in darkness very recently, particularly if they've had their eyes shut through choice or because they've been sleeping, and find it disturbing that darkness is returning so soon.

Many people with dementia lose track of their sleeping patterns, and may sleep during the day, which again can disrupt those natural rhythms of daytime and night time. Visual disturbances, like hallucinations, are also strongly associated with darkness, which could make night time very frightening. Then there is the problem that day times for people with dementia can often be quite boring and not filled with enough activity, and physical exertion, to welcome the cues that come from the light fading that suggests rest, relaxation and bedtime. The person may simple feel that night time isn't what they want, or need, at all.

One of the best examples I've promoted to support a person through difficulties experienced later in the day is to make that support proactive rather than reactive. Combatting problems that arise later in the day begins in the morning, as the person gets up. Their day needs to be filled with as much occupation and activity as that person can cope with, good levels of nutrition and hydration (this is vital to fuel the body and help the mind to process what is happening around the person) and ideally involve some fresh air. If the daylight hours can be filled with as much 'normality' as possible – and no boredom - the evening time will hopefully be welcomed as a time for rest, relaxation and eventually sleep.

For people with dementia who still want to keep on the go into the evening, bear in mind that they may be conditioned to this from their earlier life where they may have come home from work, had to cook, help children with homework and their bedtime routines, and then still needed to do housework - washing up, laundry etc - or paperwork before they could begin to relax. To them, that is their normality, and not 'sundowning'.

Eventually winding down the day in a way that the person with dementia finds familiar and comforting, like having a bath, meal or favourite drink (yes, even an alcoholic one if wanted and medication allows that - remember that we are supporting an adult, not a child!), with music playing, some reading (on paper or via audio book) or a film can also help to trigger those soothing evening cues. Be mindful that light from electronics (like TV) aren't welcome for everyone. It may also help the person to take an evening walk if that's something they feel comfortable with and perhaps used to enjoy (for example, they may have always taken the dog for a walk in the evenings, or walked home from after school activities or work). Just bear in mind that walking outside in fading light or darkness can present additional tripping or falling hazards, and could terrify some people with dementia, particularly if they are having visual disturbances, so approach this carefully (being mindful of also not becoming risk adverse in relation to health and safely issues).

Finally, think about how the person's environment supports them as the light fades and darkness comes. Is artificial light supporting them well? Dingy light may affect their mood. Some people may prefer some 'daylight lighting' that helps combat feelings of SAD (Seasonal Affective Disorder), while others will want warm, soft lighting. Lighting that helps navigation around the home or care home is important, be that overhead or floor level. Think about other 'cosy' cues too, particularly in the wintertime when periods of darkness are so much longer - lighting up an open fire effect heater for example, or lights that look like candles.

If you are a professional care worker, understanding the person's life history will be vital in supporting them to cope with evening time in the most appropriate way for them that minimises any distress they are feeling. Above all though, remember that however you support a person as the sun goes down, their reactions aren't about making your life more difficult (at a time when you are possibly feeling fatigued yourself after a long day), but merely a manifestation of how they are feeling as a result of their dementia.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886