Frank
It became obvious following his wife’s death that Frank had considerable memory problems that his wife had been covering up.
He has since been diagnosed with dementia and has great difficulty with dressing (frequently wearing inappropriate clothing for the weather or dressing in the wrong order, e.g. trying to put underwear over his trousers). He is a very proud man and became difficult or even aggressive when his daughter tried to help.
Despite being a generally well-groomed man he was also refusing to undress or wash, apparently unaware of any personal hygiene issues and resentful of any attempts to discuss this with him.
A care package was introduced to help him with personal care in the mornings and this has been successful for the most part, although he can refuse to co-operate at times.
Frank mostly stays in the house, in a small, dark living room, watching the television while his daughter goes to work during office hours.
He is able to make himself a cup of tea with biscuits but little else. He usually does not leave the house. However, as a precaution his daughter has begun locking him in while she goes to work. She has done this since an episode where he left the house during the day and was picked up by the police, in a very anxious and dishevelled state.
Otherwise Frank’s apparent interests in life are increasingly limited.
He very rarely initiates any conversations and usually gives only monosyllabic answers to questions. He does not express any wishes, hopes or desires, and time spent with his daughter is most often characterised by long periods of silence.
Frank’s behaviour and difficulties in managing suggest that he is in the early to middle stages of dementia, and that he is in difficulties.
His lifestyle is not good for him – a reducing set of options in his day-to-day routine. Living on biscuits, tea and television in a small dark room, barely conversing, unable to go out – it sounds like a prison sentence for the crime of being ill. It carries a strong sense of depression with it – and it is an all-too-familiar scenario.
Dementia is an illness where links with depression are increasingly acknowledged but still not fully explored and explained.
It is not the least surprising that some people diagnosed with dementia (or filled with dread at their own cognitive losses and increasing difficulties with managing the world) should often go through a period of depression. Figures for suicide in early stage dementia are appallingly high.
The relationship between depression and dementia, however, is not straightforward: it is easy to mistake severe and chronic, yet treatable, depression for dementia – and depression is much more common in old age than we used to acknowledge.
Carers need to be aware of this. But the link is more complex: depression may contribute to dementia. If you are apathetic and listless you give yourself little stimulation and it is easier to fall into problems – so depression and dementia may feed one another in complex ways.
While she was alive, Frank’s wife will have felt that she was helping him by covering for his memory losses and will have done so out of an understandable and loving instinct to help.
But it is horribly common after the death of a spouse to see other family members take over the lives of people living with the early stages of dementia, reducing that person to an unnecessary amount of dependence – a situation that often happens in residential and nursing care, too.
People living with dementia may well find some tasks frustrating and difficult and will be very grateful for help. But if you do everything for them, you take away their ability to do it for themselves, and if you cover up memory loss you compound a sense that it is something to be ashamed of and hidden away rather than a problem to be confronted and managed where possible.
It is vital that people are given as much control over their own lives as possible.
Many people with dementia and their partners manage to find humour in their day-to-day experience of dementia – and it is clear that this is an option that often helps people feel more dignified, human and strong.
There is clearly a place for putting yourself in their shoes here – for carers to think about what might help them under similar circumstances, to try to find meaning in confused or unhelpful behaviour.
More than anything else, Frank’s behaviour can be read as suggesting an underlying anxiety. He has withdrawn from the world and is too uncomfortable with his own position and with his relationship with the world to be able to respond positively to his daughter’s attempts to help him dress.
Applications for DemTalk
There are strategies, detailed in DemTalk, that can help with people living with dementia by acknowledging, managing and hopefully reducing this anxiety.
It is almost always better not to make a big issue of small failures and to think about trying to reduce people’s anxiety. If someone who you love, who you know takes pride in their appearance, dresses themselves in a way that makes them look ridiculous, it is easy to respond by chiding or to generally overreact. It may be much better to make a gentle comment, to lead people back to their wardrobe and leave them with or offer a selection of more appropriate clothing. After all, an eccentric choice of clothing is not the end of the world.
Helping to manage poor personal hygiene can be more problematic and is quite a common issue. Some people living with dementia may be less sensitive to the reactions of others and less inclined to go through the increasingly difficult process of dressing, undressing and managing a bath or shower safely.
A reaction of manifest irritation or disgust is only going to provoke hostility or more anxiety. It is much more helpful to think about anxiety reduction again – to draw a bath for the individual, to show them to the bathroom and to try to ensure that bathing is a relaxing experience – with privacy, soft light, bubble bath, the radio on or whatever – and to accept that there may be occasions when this will not be enough to encourage people.
Carers may have to accept that the strategy has not worked and try again later – or see if more formal carers, visiting ‘home care’ staff for example, can use a kind of residual ‘medical-type’ authority to persuade the person living with dementia that they are being helped rather than bullied.
There are broader issues here. Frank’s daughter has selflessly stepped in to help Frank after his wife’s death – but unsurprisingly this can often lead to a sense of resentment and of being trapped, at a conscious or unconscious level.
It may simply not be the best arrangement – not every father and daughter can live together happily even without the complicating factor of a debilitating illness and there is nothing to be ashamed of in that.
It doesn’t seem to have worked out well, anyway. Frank has reduced himself to monosyllabic replies, which is no doubt frustrating for his daughter and which does him no favours in terms of keeping his own sense of himself as a person, maintaining his social skills, contact with the world and interest in it.
It would surely be sensible to look for social contacts to reduce isolation – perhaps contact with old friends in a familiar social situation like a pub, café or club, or organised activities in a day centre. For almost everyone, social contact is a necessity.
Having said that, for some people living with dementia at some stages verbal contact becomes very difficult – and it is possible that Frank has reached that stage. Nonverbal contact can assume far greater importance at this stage – approaching people in a reassuring way, holding their hand, hugs and smiles – these are all approaches that give a sense of contact and of life shared which are understood and helpful long after people can no longer respond verbally.
The strategy of locking Frank in needs comment. It may be an understandable reaction to potential dangers but it is clearly a mistake.
In health and safety terms it is unacceptable (what happens if there is a fire?), but it also reduces Frank’s world to a prison and deprives him of a contact with the world that his behaviour suggests he needs.
Again, socialising with friends or visiting a day centre might help – but at this stage Frank and his daughter perhaps need to be thinking about the presence of a carer through the day or a move to an environment like a residential or nursing home where Frank’s life can centre around contact with others and the world around him again.
One of the things a good residential care environment will certainly do is to look for Frank’s interests and to try to cater for them.
The authors remember hearing the story of a clerk in residential care who had worked her whole life in accountancy, adding figures. She had come into residential care as she had become unable to manage for herself but was clearly aimless, unhappy and frustrated.
Staff in the home talked to her and to relatives and had the bright idea of giving her columns of figures in the format she was used to and an adding machine. She would sit happily for long periods working through this task, conscious of feeling that she was useful. At roughly 5 o’clock every evening she would stop. Staff learnt that she had always unwound at home with a gin and tonic and began to provide this, rewarded almost always with a genuinely happy smile and a toast. This really was putting good care into practice.
