"Truth" or "Lies"?

In my previous post I discussed confabulation, a lesser-known variant of delusion or hallucination, which can be experienced by some people with dementia. The challenge these symptoms pose to carers is how best to respond, in order to minimise distress?

Broadly speaking, there are three approaches:

Reorientation: attempting to reassert the factual truth, to override the delusion.

Distraction: changing the subject or focus of attention, to make the person forget the delusion.

Collusion: accepting the delusion and going along with it.

Any one of these approaches may be applied at different times and in different situations with the same person; you may find that one or other is more effective with their personality, or in the context of a particular relationship; and there may be no consistency – what works on one occasion may not on another, even moments later.

In my experience, reorientation is ineffective beyond the earlier stages of dementia; distraction too can be of limited use, if the person with dementia is inclined toward obsessiveness and cannot easily be diverted.

There are also ethical questions involved in each decision, either to disabuse someone of a (perhaps comforting) delusion or to collude with their misconception; and we may consider the significance of whether the respondent is a family member or a professional – in whom do we place greater trust for “truthfulness”?

In summer 2014 I was invited by the Mental Health Foundation to give testimony at their inquiry, Dementia and Truth-Telling. This was a major study into the ethics and practicalities of responding to altered states of perception in those with dementia. I was asked to consider a literature review commissioned by the Foundation, to discuss the contents and make observations from my experience.  

These are my headline points:

“Truth” or “lies”? 

There is of course a wider philosophical question, “what is truth?”, for “truth” as a concept is largely subjective. But for our purposes here, I use the term to mean fact: when responding to a person with altered perception, should we assert fact or not? 

I would say context is key. Acceptance of benign misconceptions can sometimes be justified, if this acceptance allows the person with dementia to feel more content or helps them to be compliant with necessary actions for their material good (e.g. eating/drinking, personal hygiene, medical treatment, accepting admittance to a place of safety, allowing responsible management of their financial affairs) – and if such delusions are not themselves harmful or do not create material difficulties.

For instance, it would not be helpful to collude with a delusion that a friend, family member, or tradesman has stolen from the person with dementia or otherwise done them harm, if there is no evidential basis for this.

Constructive collusion or “white lies” may however be easier and more effective for professionals than for family, because they have no shared personal history to create a knock-on effect. 

Where the carer has an emotional investment in the veracity of what is said - a shared history and ongoing emotional relationship with the person - the issue is much more complex. See my post, It's (Not) So Funny How We Don't Talk Any More.

I cannot see a justified role for proactive lying in daily care – i.e. deliberately creating an untrue version of events for reasons other than the contentment and well-being of the person with dementia. If someone is already experiencing paranoid symptoms and is generally mistrustful, it seems doubly important to me not to give them any cause for justified mistrust, if this can possibly be avoided. 

For that reason, my own approach is largely to be reactive to my mum’s beliefs and expressed thoughts, rather than proactive. If she asks me a direct question, I try to be as truthful as possible, while perhaps omitting or steering her away from the more distressing details of that truth. 

For instance, if she asks where “Daddy” is (either my father or hers), I will say “he’s not with us any more” and hope she will leave it at that. If she goes on to say, “He’s not dead, is he?”, I will say yes, but in as low-key a way as possible. I will not proactively “remind” her, nor make a big deal of her having forgotten, nor go into any details unless asked, as that is likely to distress.

I generally try to accept whatever she believes in the moment, unless it has a negative result for someone else – e.g. an accusation of wrong-doing against an innocent party (myself included).

Emotion is more memorable than fact.

Dementia erodes a person’s capacity for reason, logic, and factual memory. Emotion is what remains. Therefore, a person with dementia will be more likely to register an emotional impression than the factual content of what is said or done. 

Negative emotions, such as fear, anger, hurt are unfortunately more powerful than positive emotions in my experience. My mum will remember being upset far more readily (and for longer) than any pleasurable incident. 

So it’s more important to me to support her in feeling content, than to reinforce any factual message. Whether this involves “truth” or “lies” will vary according to context; the content is relatively unimportant, as it will be instantly forgotten – it is the emotional impression (if anything) that will be retained. 

Powerlessness.

It’s noted in the Literature Review (pgs 22-23) that less time is spent by carers on social interaction than on task-based care. While I would agree that time and resources are the main determinants here, particularly for professionals, I would suggest that a feeling of being powerless to ameliorate mental distress is also a factor.

Beyond a certain stage of dementia, it seems that nothing can truly answer the fear, hurt, and loneliness in a person’s head, because it is impossible to reason away fears, and efforts at emotional comfort are limited by the difficulty of being unable to acknowledge the truth of distressing life circumstances. 

Therefore the family carer may tend to focus on practical things, as these are elements where some positive difference can be made.

Contented Dementia/Compassionate Communication: effect on family carer.

The principles of contented dementia and compassionate communication are now routinely espoused in public (in media, specialist literature/websites, and by some professionals), to the extent that dissent can be perceived as unacceptable.

These principles can roughly be summarised in layman’s terms as: don’t ever argue with or contradict the person with dementia; enter into their reality and accept that they can’t enter yours.

While I would agree that this approach can be helpful in promoting contentment in the person with dementia, I think the potential negative effect on the family carer is largely unacknowledged. 

If, as the primary carer, you feel constantly told by everyone that your reality does not matter, it can seem tantamount to being told that you don’t matter; and any distress, frustration, grief, or resentment you may feel is selfish, ignoble, and to be stifled, because it is “bad for” the person with dementia.

This can be hugely destructive to the carer’s mental (and indeed physical) health. It can lead to the carer effectively living under similar conditions to those of domestic abuse: e.g. always subservient, walking on eggshells for fear of upsetting the other person, constantly censoring or modifying their own words or behaviour, denying their own needs, isolated from wider family and friends (of whom the other person may be jealous or mistrustful), and trapped in the house (by the other person’s separation anxiety or paranoid fears). 

A constant negation of the primary carer’s factual reality can lead to their feeling that they have been “erased” from the outside world. This can be mitigated to some extent by other family and friends supporting the carer’s “real” life; but for a sole carer in a domestic setting, the long-term effect can be catastrophic.

I would like professionals (and lay commentators) to acknowledge these issues and consider the holistic good of both parties, when advocating the principles of “Contented Dementia” in the home. 

See my posts, Paranoia - and the Other Fear That Dare Not Speak Its Name and A Stranger in My Home Town.

Environmental "Lies"*.

In recent years, artificial retro environments have become fashionable in some care homes and developments. I can see that it's a positive approach to try to accommodate and support the perceptions of the resident; and artefacts from the time of a person's youth may create a familiar ambience and trigger memory for some people some of the time.  

But I'd beware of investing too much (effort, faith, and finance) in such things, as they can become management gimmicks, not truly responsive person-centred care - which primarily requires human interaction.  A "one-size"  time-zone (e.g. 1950s street) is unlikely to chime with the mindset of all the residents all of the time - there may be a range of ages within a residential group, and even for the individual, different eras may be important (or conversely meaningless or disturbing) at differing stages of their condition.  And how often can a home afford to update decorative features in response to changing social needs, when most now struggle to meet daily running costs?  

Given how hard it is to second-guess a person's internal reality in the moment, it's really not possible to create a consistent (and future-proofed) "alternative reality" that will answer all the confusions and insecurities attendant on dementia; and a fake environment, however well meant, is fundamentally dishonest.

My Biggest Lie.

I have said that I don’t proactively lie, only “collude” or lie by omission when necessary for mum’s peace of mind. But there was one very big exception, which posed a terrible dilemma for me.  I’ll return to that in another post…

* This point added in March 2017.

Confabulations, No Celebrations

Confabulation. Sounds like a hybrid word, doesn’t it, like “fantabulous” or “ginormous”? And indeed it is a hybrid – of fact and fiction. If you haven’t heard of it as a term, you’re not alone; but if you care for someone with dementia, you may recognise it in action.

I’m not a medic or scientist, so I’ll describe as a layman how I understand the difference between three related symptoms of some types of dementia: hallucination, delusion, and confabulation. 

We may be more familiar with the first two:

Hallucination – seeing, hearing, or smelling things that are not there.

Delusion – believing things that are not true or misinterpreting information.

While these two states can be very disturbing for both the person with dementia and those around them, they are reasonably straightforward to grasp. Others can tell at once if there is, or is not, “a man in clerical robes” or “a big fat bottom!” at the end of the bed, or a woman whispering in the wall. 

Delusions, such as a belief that a dead relative is still alive, can be harder to handle, but the factual truth can be determined. 

Confabulation, however, is a complex amalgam of fact and fantasy, in which a false narrative may involuntarily be created by a person’s belief that an imagined scenario is memory. 

This imagined scenario will usually be woven around a kernel of truth: an event that actually happened, transposed to a different time and place, or involving a different set of characters; or an emotional trauma that was real, but misremembered in a different context.

And because there is an element of veracity at the heart of it and it may contain mundane, inconsequential detail as well as major incident, such a hybrid narrative may be very hard for the carer or other friends and relatives to unravel. 

For instance, my mum was a professional singer in her youth. I know that on several occasions she studied at the famous International Summer School of Music at Dartington Hall in Devon. This is her treasured photograph of the composer Stravinsky (right), a souvenir of one of those sojourns (probably taken by Dartington's official photographer, Catharine Scudamore).

At around that time, she also attended the International Eisteddfod at Llangollen in North Wales. That’s a fact. But in latter years, she began to tell me that she had been present to see the tenor Pavarotti “make his name” there. Now Pavarotti did perform at Llangollen in 1955 – in a choir with his father. The choir won first prize in competition. Pavarotti later gave many interviews in which he credited this as a formative experience that inspired him to pursue a singing career. 

But he was only 19 at that time and had yet to make his professional operatic debut; he would not have been noted individually. Yet my mum was adamant that she had not only been aware of him as a soloist, but that the performance had made him a star; and she had seen it happen.

Then in 2007 a cousin of mine, whom neither of us had previously met, came from abroad to stay with me for a few days on the way to a friend’s wedding. I had planned to take her to visit mum too and see the countryside around my hometown; but in the event there were terrible floods, and the water supply at mum’s was cut off for nearly two weeks. I couldn’t take my cousin there after all. Mum, however, would later talk about this visit as if she had not only met my cousin herself, but had hosted the entire stay. Her “memory” of this was based solely on what I had told her of things I had done with my relative.

Another time, I went into hospital for major surgery and was anxious about mum in my absence; the surgeon kindly called her from the recovery room to let her know I was all right. Mum was subsequently convinced that she had actually met the surgeon, describing in great detail what she had looked like and where they had met (“on the stairs”), despite this being a complete fantasy. 

Mum, in her singing days

She also told a friend that she had “been up to Ming’s; I didn’t go in, I just stood outside and looked up at her flat” – an account which greatly alarmed the friend, as mum was by then too frail to make such a long journey on her own and I was in any case not at home. Yet mum’s tale had sounded so plausible that her worried friend had called me to check whether it might indeed have been true. It was not; but another friend had brought mum to visit me at the hospital a few days after the operation. The surgeon had been in to check on me earlier that morning (long before mum had arrived) and I had mentioned this. So you can see where the seeds of mum’s hybrid story were sown...

Now you may say, what’s the problem? These are all fairly innocuous confusions; it doesn’t matter if they’re not true. 

And with examples like this, I agree that there’s no gain in trying to point out anomalies or assert the factual version; contradiction will only provoke distress. 

But other confabulations may not be so benign. I have detailed in an earlier post a particularly traumatic incident where mum believed that a tradesman had broken into her house and was holding me hostage. It was of course a terrible delusion, but those to whom she told this story had no way of knowing at first that it was wholly imagined. 

Similarly, she once told me, when she herself was in hospital after a fall, that she had been down the stairs (the ward was on the 11^th or 12^th floor and mum is lift phobic) and had sat in the foyer, where an orchestra had been playing; and that she had been taken from “the bus station” (which I later recognised from her description as the ambulance bay) to a nurse’s house, where she had been abused. 

Logically, I knew these things were all highly unlikely, if not impossible; but she believed them so completely and vehemently that I did wonder if there might be some grain of very confused truth.

Such threads of confabulation can be impossible to disentangle. The question then for carers is how should we respond? 

That’s something I’ll discuss in my next post, "Truth" or "Lies"?…