Edith had lived in a warden-controlled flat on her own for 20 years before moving into the residential home. However, she became increasingly frail and physically unwell due to a heart complaint, which requires regular medication to prevent serious complications.
She also complained of feeling lonely, despite visits from friends and family several times per day. The problem was that she almost always seemed to forget visits as soon as family members had left and she felt lonely and neglected when not in company.
The move into residential accommodation was a struggle, with Edith finding it difficult to remember where she was or how to find bathrooms or her bedroom. She still often asks to go home (to the house she owned with her deceased husband over 20 years ago) or becomes convinced that she is a matron on her ward and orders the staff around authoritatively.
Whilst carers can often play along with this belief successfully, sometimes when she is in this mood she would refuse medication, believing them not to be necessary. Staff began mixing it into her food to ensure medication was taken regularly, for her own well being (having sought consent from her family). But Edith became suspicious of changes to her food and drink and started to refuse meals, shouting that ‘they’ were poisoning her and complaining loudly that all the other residents were being poisoned, too.
Staff stopped putting medication in food but Edith remains suspicious and is now refusing medication more often that not. She has started losing weight and is also more at risk of heart complications as a result.
Edith is an illustration suggestive of someone living with the middle stages of dementia. She is a woman whose history implies competence and coping, who managed by herself for a long time.
People who are able to manage in this kind of way often only show signs of needing help when their illness has progressed further than most, so the transition to residential care is difficult. Adjusting to new surroundings is a complicated process for people who have lost much of their ability to learn and retain new routines or to adapt old and ingrained patterns.
It must have been difficult for Edith’s family to cope with her illness. They dutifully visited her but their visits were not remembered – this is a common experience for families but always disappointing: it feels unfair for everyone concerned, although gentle and respectful reminders of subjects discussed or help offered can sometimes help jog a memory – or at least provoke grudging acceptance that a visit probably happened!
People like Edith with their own histories of caring for people are often particularly difficult to help when they are ill or vulnerable themselves. Any professional carer will tell you how difficult it can be to manage other professionals who need residential care.
This can run through a spectrum from busy attempts to help to stubborn resistance to any form of approach from people all too familiar with the ‘tricks of the trade’. Certainly Edith shows many signs of being (at least periodically) uneasy in her new environment – and feeling undermined by it.
Applications for DemTalk
What can DemTalk offer in the way of help?
The most immediate and practical problem centres around Edith’s medication.
This is a vexed subject. Anti-psychotic drugs (developed to be given to people suffering from schizophrenia) used to be given routinely to anyone with dementia who was ‘difficult’. Often this ‘difficulty’ amounted to no more than independence of spirit linked to irritation at one’s own difficulties and the attempts of others to help with them – precisely the kind of characteristics you would expect someone with Edith’s temperament and background to show.
Anti psychotic drugs often have nasty side effects (including exacerbating irritability, though sleepiness and confusion are more common) and are physically and mentally de-habilitating. That’s not to say that they should never be used – there are individuals who are so distressed or whose behaviour is so aggressive that chemical management is the best option available.
But Edith’s treatment has been particularly unhelpful. Attempting to conceal medication in food sits on the borderline of ethically acceptable behaviour and is almost never successful: much medication tastes unpleasant when concealed and most attempts at concealment are unsuccessful in the long term. They often lead to paranoia in the people to whom medications are being given, particularly in people with a suspicious or sceptical bent, which ex-professionals like Edith tend to bring to residential care.
Is her paranoia justified (and her attempt to help fellow residents by warning them)? Well, taking seriously the first level of the toolkit, in this instance Edith’s individual’s right to dignity and being treated like an adult with choices is being violated. What do we do when Edith asks us if we are poisoning her (or asks us directly if there is medicine in her food). Do we lie to her?
The question of lying to people who have dementia has recently provoked enormous debate – and probably always will.
There is a need here to think about clear speaking in its broadest sense.
Edith illustrates the issues. We would argue that it cannot be justifiable to lie to Edith about the medication in her food – or to try to deceive her by hiding food in it in the first place. Both actions undermine her personhood and diminish her and her carers by relegating her to a status below adulthood. Alternative approaches – patience and persistence in offering medication, behaviour modification techniques, something as simple as syrups instead of tablets – are all better than a lie in this context and much more likely to work.
There are more morally complex issues around lying to people with dementia.
Some theorists of care practice used to argue that in the interest of ‘reality orientation’ (encouraging people to retain the best understanding of the world around them that they can) lying could never be justified.
At its extreme this approach might be (and occasionally still is) interpreted as meaning that whenever Edith mentions wanting to see her husband she should be reminded that he is dead for her own good, so that she can come to terms with the fact. Anyone who has tried this will know that it can come to seem pointless, even cruel.
This is not to say that it can never be right to mention the loss if Edith asks a direct question, of course. But in day to day discussion, when Edith asks to see her husband it is because she is missing him.
A distracting comment that may acknowledge loss but allows Edith to remind herself about her relationship and its meaning to her feels natural. When Edith asks to see her husband we can say something like: ‘Tell me about Tom, Edith. How did you meet him? What would you do together when he came home from work?’
Edith also presents her carers with a more complicated decision about truth and people living with dementia.
When she behaves as if she is matron, perhaps finding herself in a mental world where she believes that she still is, should we enter into her world (which she may find comforting and which may allow her to reminisce) or is this a deception to be avoided?
As with so many dilemmas associated with living with dementia there is no right or wrong answer to this question.
If the matron’s role demands ticking off an innocent and puzzled fellow resident (something the authors have seen a number of ‘Ediths’ attempt!) we need to find a distraction. If (as it often does) it involves being helpful (making beds together or setting tables) it is a bonus. It does not need re-enforcement beyond sincere thanks.
There are care practitioners who have strongly advocated actively encouraging people to enter into remembered roles like this: boundaries are never clear, however, and need to be explored.
It re-enforces Edith’s sense of herself to remember that she was a matron and probably helps her feel more comfortable with the difficulties of surrendering to a residential care environment if she remembers herself as authoritative and helpful in that context. It’s unhelpful for her if she starts to worry about responsibilities that she is missing, or if she allows herself to be perpetually deceived.
Perhaps, in the end, it is a matter of staying with what both parties feel comfortable with at any given time, like most human exchanges.
It is perhaps also worth mentioning Edith’s shouting to residents, warning them that they are being poisoned. Although Edith may well feel she is doing the right thing by her fellow residents it isn’t going to help them feel relaxed and in that sense is an unhelpful behaviour. We would suggest decoding it is pretty simple: Edith would rather drugs were not being slipped into her food. Stopping the practice would help!
Edith’s inability to remember her family’s visits is particularly poignant, and is similarly easy to ‘decode’: Edith would like to have her family with her always and feels deprived when they are not around.
It is often hard for relatives to visit people living with middle or late stage dementia, who may sometimes or often be unresponsive or repetitive, ungrateful, aggressive, dismissive or apparently inclined to forget the visit entirely moment their visitor walks out of the door.
When visiting someone who may appear to have changed out of all recognition, it is easy to understand that relatives may find such visits so distressing that they give up entirely.
However, the authors’ experience of professional care suggests that many people with dementia will remember such visits periodically and remark on them with real pleasure – and that loneliness does not cease or the wish to be loved disappear, even when memory of contact becomes intermittent.
People who are visited and who remain a part of relationships with families and friends are almost always happier in themselves.