Bill
He retains a keen interest in golf, which he plays most days. He has been an active member of the golf club for many years and frequently spends time at the clubhouse drinking whisky and smoking cigars with old friends.
He has never been married and has no children.
He has always been a very outgoing man, very ready to tell a story. Friends have noticed that these stories have been becoming increasingly repetitive and his language and behaviour have become increasingly ‘colourful’ and his manner disinhibited (i.e. Bill now sometimes gets annoyed or upset if friends tease him gently about exaggeration and has actually lost his temper or become weepy in response).
When challenged about this he has, at times, become abusive and threatening.
Bill has always been financially shrewd previously. However John knows he has been taking out more money than he needs from the business, keeps very large amounts of money about his person and is lending it to people he does not know well, only later to accuse them of stealing from him.
He is perilously close to being permanently banned from the golf course and clubhouse, especially as he has been showing little regard for other people’s golf rounds and the rules of the course.
Bill’s drinking has been escalating and many at the club are actively avoiding him.
John is one of the few people who will tolerate his abrasive behaviour but his patience is also wearing thin, especially as Bill refuses to acknowledge that he has any problems or to seek help.
Bill may be in the early stages of dementia. His behaviour is changing to an extent where it is becoming noticeable even in the context of a lifestyle that Bill can manage reasonably effectively and which allows a degree of eccentricity.
However, Bill is increasingly facing a situation where his behaviour may lead to distress in others or humiliation for himself.
He may be banned from the club that is providing the focus for his life. He may even find himself at risk of serious financial exploitation given his increasing recklessness with money.
Early stages of dementia taking this form can be very difficult to manage. There is a thin and permeable line between eccentricity and changes of character and behaviour associated with the illness.
We have only to think of the changes we have gone through from adolescence to adulthood, from youth to middle age, as the result of parenthood, job change or retirement to understand the extent to which change is a natural part of the order of things.
In this and all contexts, character and behaviour is fluid and dynamic, reflective of surroundings and social change as much as any inherent immutable outlook on the world.
Who is to say that Bill’s behaviour is not simply the product of a new and entirely justifiable relaxed attitude to life? Playing golf, throwing money around and drinking whisky all day does have a certain attraction, after all…
Applications for DemTalk
Here are three crucial factors here: the extent to which Bill’s behaviour reflects loss of control rather than lifestyle choice, the degree of risk that his behaviour places him under and the question of his insight into both these areas.
How does DemTalk apply in these contexts?
As Bill’s friend and business partner, John will probably feel a need to explore the issues involved in Bill’s changed behaviour. This would not be an easy task under the best of circumstances. It is made considerably more difficult if John suspects that illness underlies and sustains the behaviour.
There is a clear need for conversation management in this context.
John needs to begin by thinking through what he wants to say to Bill and why he wants to say it. It might well be, for example, that John wants to find out the extent to which Bill is aware of the changes in his own behaviour and whether he is worried by them himself.
If that is the case is it a good idea for him to see a doctor? Does he want to continue to go to the golf club? If so can he modify his behaviour – or if he is too ill to do so, does his condition warrant discussion with staff at the club? Is Bill aware that his changed attitude to money puts him at risk? Can he and John arrive at strategies for changing the degree of risk involved?
These are not easy questions to approach but a degree of thinking them through before a discussion will help considerably.
In terms of simple mechanics, John is going to have to find an appropriate environment and time for this discussion to take place.
Might it be best to arrange to meet Bill at home, before he has started drinking or getting himself into his clubbable frame of mind? A quiet, reassuring and distraction free environment is surely going to be helpful.
Once this environment has been established John is going to have to take the conversation as it comes, allowing Bill to say what he has to say or to walk away, despite the areas he has identified for discussion.
Any other course is pointless bullying: it simply won’t work for people living with dementia.
It is difficult to guess whether Bill will be grateful that a friend is raising an area for discussion that he himself may have been worrying about and which may give Bill a good reason to visit a doctor or talk to family members.
It would be no surprise if Bill becomes defensive, angry or dismissive instead. It may be that these reactions will melt away if John persists; it may be that the subject has to be raised a number of times before Bill will come to terms with the truth; it may be that Bill has no insight at all into his behaviour or that he is frightened of admitting the possibility of illness and will deny it on that basis.
All these options and more are distinct – and difficult – possibilities.
John will need to call on other skills from the toolkit, based on thinking about listening and speaking. He will need to make sure that he is speaking clearly and simply, returning to points if necessary if Bill forgets them or circles around them, conducting the discussion at a pace that allows Bill to manage it comfortably.
John will need to be patient and to think about how difficult the discussion may be for Bill. He may need to be conciliatory or sympathetic. He may need to stop entirely if it becomes clear that the discussion is too painful to continue with – and to think about whether it can and should be recommenced if so.
Most people living with the early stages of dementia have insight into the fact that there is something going wrong.
Many are aware of, worried and frightened about the increasing difficulties they are experiencing in managing their lives – forgetting important tasks, getting lost, finding chores they used to manage easily beyond their capabilities.
Attributing these difficulties to a chronic and progressive illness takes considerable courage, self knowledge and resolution and is never going to be an easy insight to come to terms with.
It is not surprising that some people shy away from it completely or that people may chose to live with a selective sense of this insight, choosing to ignore increasing risks and refusing to look at difficulties at times.
This can be extremely worrying for friends and relatives. For example, what should John do if Bill cannot accept that he needs help and continues to visit the club, growing increasingly reckless with money, increasingly offensive, putting himself at risk through driving badly or failing to be able to find his way home? Can John do anything about the fact that Bill’s lifestyle, living on cigars and whisky, may be actively contributing to making him more ill?
The truth is that there are limited options – informal carers often feel that they should have a legal recourse, taking over family member’s affairs if they are at risk – or that the state should intervene and take control of the lives of people living with dementia (especially in forms that limit insight and put them at risk) into some form of paternalistic protective custody.
Distressing as it may frequently be for caring relatives and friends to watch people lose control of some aspects of their lives or to put themselves at risk, there is a strong case for it.
Most people living with dementia will seek help – or find themselves in a position where it is clear that they need help – when they are ready and not before.
It is important to treat people with respect and to allow them choice and freedom. Part of this approach must be to allow people to put themselves at risk, to feel themselves a comfortable way through their own lives, and to accept that this may be distressing for those who love them and who want to keep them safe.
Level One of the toolkit sets this out and is the ‘prime directive’: there is no true communication without acknowledging personal freedom.
Perhaps the best that can be done under some circumstances is to accept risk, minimize it where possible and to try not to worry about in unduly. Perhaps John can do little more than cease to buy Bill whisky and cigars, while respecting his right to continue to buy them for himself.
He may have to content himself with offering support when he feels able and watching for an opportunity to help – or a crisis that will allow the involvement medical or social care professionals.
