Clare Morris
Counselling ANd Diagnosis In Dementia (C.A.N.D.I.D) - the National Hospital for Neurology and Neurosurgery.

This series of articles attempts to develop an understanding of the experience of symptoms of dementia for the person with dementia in order to provide the carer with a framework with which to make communication easier. The suggestions in this article reflect the opinion and experience of the author. It is important to discuss any strategies for intervention with the professionals involved in the care of the person with dementia.

Part 1 invites the reader to explore the nature of the symptoms by identifying them in our own every day experience, and deals with some of the issues that arise in communicating with someone who has dementia.

Part 1: The Experience of Dementia

(Journal of Dementia Care July/August 1999)

Unusual behaviour and problems with communication are commonplace in caring for someone with dementia. These communication problems are closely related, and sometimes the cause of the difficult or unusual behaviours that can be so distressing for both the person with dementia and the carer. Dealing with communication problems and behavioural difficulties are arguably the two most challenging and stressful aspects of caring for someone with dementia.

In the first place it is worth exploring how and why these problems may be arising, in order to understand the way in which the person with dementia may be seeing things in general, and an isolated event in particular. Equally important, it may also help the understanding of communication breakdown from the carer’s point of view.

We ourselves are likely to have examples in our own lives of completely normal errors in memory or thinking:

• have you ever mislaid something that you know you put in a safe place?
• have you ever woken up and been unsure where you were?
• have you ever been greeted by someone as a friend but not been able to place them?
• have you ever started to say something and lost track of what it was you were trying to say?

An important theme that emerges for all of us is a sense of feeling stupid, angry, frightened, lost and anxious. There is a tendency to ‘cover up’, particularly when the person involved with us in the situation is not well known to us. We tend to accuse and blame others for our failure.

The kinds of behaviour that help ease the situation for us tend to be when we are not ridiculed or laughed at, but our dignity is left intact; when we can gather clues to help reorientate ourselves; and when someone sympathises with our problem by correctly acknowledging our feelings in a given situation. Sometimes we feel better when we are allowed to move on in our interaction without dwelling on our ‘mistake’, however it can also be important to have experiences such as these addressed in a sensitive way.

We are all different from each other and experience what happens to us and around us in our own individual way. However the person with dementia, in addition, is likely to be experiencing the world in a distorted way because of damage to their brain affecting vision, hearing, smell, touch, balance, memory, language and thinking. As a result they are likely to feel very insecure, anxious, paranoid and frustrated. Experience suggests that it can be useful to assume that the way they see things is true and real for them, and to try to step into their shoes as far as is possible.

Communicating with People who have Dementia

There are four common reactions to the anxiety generated when we are caring for someone who does not seem to ‘make sense’, which you may recognise:

we may conduct a monologue: the person with dementia and their carer carry on ‘parallel’ conversations but neither is listening or responding to what the other is saying, communication is therefore only ever ‘one sided’;

we may speak and make decisions for the person: "does he take sugar?"…"yes he does"

we may try ‘reality orientation’: the person with dementia is corrected and an attempt is made for them to be ‘reorientated’ to the ‘real world’; "you know I came to see you yesterday - I told you so only a moment ago - I brought those flowers"

we may find collusion easier: the carer goes along with the person with dementia’s disorientated communications.

Issues arise with all of these strategies for communicating with people suffering from dementia.

Conducting a monologue and speaking for the person There is no exchange of information. The person is effectively living in their own private world. But two way communication is a vital part of human existence. We are social beings, and the experience of dementia is often socially isolating and deprives the person of ‘normal’ sensory input (because of brain damage they are not hearing, seeing, feeling and perceiving the world as we are), which is possibly the cause of many secondary symptoms of dementia. What is important is not so much the content and structure and accuracy of what someone says but that it is responded to, is meaningful, and there is two way communication between people. A sense of having an effect on your environment is central to well-being.

Reality orientation There is a requirement for the person with dementia to attempt to remain in our ‘reality’ (to see things as we see them and interpret events as we do) and yet they are unable to do so. This confronts the person with their own failures, which they may well prefer to ignore, and in practice seems to give rise to many different responses ranging from anger to withdrawal. In this context it is important to consider how much the person with dementia feels they are on "shifting sands". At any moment they may lose the track of what is being said or thought. The more they feel insecure, the more they question themselves and the more their trains of thought fall apart.

Collusion It can be very tempting to go along with the person’s confused attempts to engage in conversation. However people with dementia often have ‘lucid moments’, good days and bad days, thereby taking you by surprise. The stories that develop can get very complicated the more people become involved, and maybe other people will be responding in different ways, by correcting them for example. Perhaps ‘lying’ (although this may apparently be what the person with dementia is asking you to do) may weaken their faith in you and ‘reality’, perhaps causing the person with dementia to become more confused. It may represent an immediate solution to the problem of talking with someone who is confused, but may do little to help the person with dementia. Being honest but perhaps economical with the truth, and responding to people’s feelings and what they might be trying to share, rather than the truth or accuracy of what they say, can be a more constructive way forward. In the example above, where an elderly woman is talking as if her mother is alive, it might be more appropriate to ask if she argued a lot with her mother?; does she miss her mother?; what was her mother like? This promotes interaction and often the person with dementia begins to talk in a more orientated way, about her mother but not as if she were in the here and now. Perhaps the person with dementia is talking this way because they find themselves being washed and dressed and cared for as if they were a young child and it brings up memories of their relationship with their mother. This will be discussed in greater depth in subsequent articles.

In order to achieve two way communication the onus is on the carer to be creative in their approach by as far as is possible attempting to put themselves in the person with dementia’s shoes. In all of our relationships with people we are attempting to stand in the other person’s shoes in order to understand them. We use our own experience and what we know or anticipate about their experience (among other things what they like, dislike, believe in, their life history etc.). This, too, is important for people with dementia. However, because of difficulties in communication and/or memory, we need to become familiar with their life stories in order to interpret what the person with dementia is trying to say to us in order to make it possible for them to take part in two way interaction.

In order to communicate with someone who is experiencing the symptoms of damage to the brain, it may help to take into account what parts of the brain are affected, and therefore what actual and what possible neurological impairments are affecting them. A basic understanding of the functions of different parts of the brain can help our observations.

• The lower part of the brain (known as the brain stem), is responsible for many basic functions including alertness and activity. Damage to this part of the brain affects consciousness.
• The middle parts of the brain receive, process and retain information from the external world. For example information from all five senses (sight, hearing, touch, smell and taste) is integrated here. Memory can be affected by damage in several areas of the brain but particularly the inner parts of either side (the medial temporal lobes).
• The outer or top layer of the brain (the cortex) is the part that organises, executes and inhibits thoughts and behaviour. This is the processor in our computer (the brain). Someone with damage to the front part (the frontal lobe) may be able to learn, perceive and remember but may have little control over the way they behave. Antisocial, obsessive behaviour, lack of concern for others, apathy and an inability to recognise that they have problems are all features of damage to this area of the brain. Any, but not necessarily all, of these symptoms may occur in different people or at different stages of the same illness. Damage to the back of the cortex (the occipital lobe) causes problems with vision. Damage to the left side often causes problems with language: finding words,saying or writing them or understanding written or spoken language, damage to the right side may cause visuo-spatial problems - problems with recognising how bits of the world fit together.
• The structures underneath the top layer are known as subcortical. Damage to these structures often produces a "slowing of transmission" giving rise to the slow ponderous thoughts and actions characteristic of vascular dementia or PSP.

Each of these difficulties can give rise to a wide range of behaviours, for example being ‘blind’ and yet recognising someone across the room; believing a caregiver to be attacking or abusing them because they haven’t seen the person approaching; withdrawal because they can’t make sense of what they see; or even helping themselves to food from the wrong plate. Perhaps the most important visual problems that are often misunderstood are "illusions" and "visual agnosias". Do you remember as a child, thinking, in the half light, that the clothes on the bedroom chair were a monster or an intruder? The person with dementia may often ‘misinterpret’ what she or he sees. These misperceptions or illusions may lead to a simple mistake or may result in strong emotions, such as fear, anxiety, anger, and so on. In addition, and quite separate, are visual agnosias. This is where the object is seen clearly but not ‘understood’. It may either be seen as something else or just not recognised.

Different strategies for communication will be addressed in relation to specific problems in later sections. It might be useful to think of them in terms of a ‘toolbox’ which can be added to. You have alternative strategies at your disposal and can try them out in different situations with different people, in light of the way you believe the person with dementia makes sense of it. The emphasis is on trying out different strategies, as an experimental approach to communicating and caring for someone with dementia. It is a creative process unique to the individuals involved, and the ‘tools’ needed may change over time.

In the following articles an attempt will be made to describe and explain some common difficulties that arise when caring for someone with dementia. Everything here, whilst grounded in theory and more appropriately clinical experience, is intended to be offering ideas and suggestions, rather than giving a ‘recipe’ to follow. Every person suffering from dementia is different and there are no hard and fast ‘rules’ as to what to say or do, only guidelines and the courage and appropriate support to enable you to be creative in the way you interact. Try things out and discuss them with fellow carers or with your family and friends. Whilst I would welcome any feedback and am happy to discuss specific situations by e-mail or over the telephone, (given demand doesn’t exceed the ability to deliver!) it is important for each person to develop a support network locally in order to share and imagine the reasons why someone with dementia behaves as they do and different ways to respond to it. If you are able to create this context for you, it can not only take some of the stress out of caring but also can make what is understandably a very challenging experience a more rewarding one.

Further Reading

Dalton, P. (1994) Counselling People with Communication Problems. Sage Publications.

Jones, G. and Miesen, B. (eds) (1992) Care-giving in Dementia Volume I Routledge.

Miesen, B. and Jones, G. (eds) (1997) Care-giving in Dementia Research and Applications Vol. 2 Routledge.

M.P. Bender and R. Cheston ( 1997) Inhabitants of a Lost Kingdom: A Model of the Subjective Experiences of Dementia. in Ageing and Society, 17, pp 513-532. Cambridge University Press.

Miesen, Bere. (in press) Dementia: A Close Up. Translated by Gemma M.M. Jones. Routledge Tavistock.

Rose. L. (1996) Show Me the Way to Go Home. Elder Books USA.

Jones, G.M.M (1997) A review of Feil’s validation method for communicating with and caring for dementia sufferers in Current Opinion in Psychiatry Vol 10 pp 326-332. Rapid Science Publishers.

Harvey, R.J. (1996) Review: Delusions in Dementia in Age and Ageing 25:405-408.

Rossor M. (1993) Alzheimer's disease. British Medical Journal: 307:779-782

Subsequent sections look at specific difficulties that often arise making suggestions for strategies to help the situation.

Part 2: Denial and Challenging Behaviour

(In Press)

Thinking first generally about denial in ourselves, we tend to deny things that don’t fit in with our view of things, things that are too painful to acknowledge, things we are uncomfortable with, or things for whatever reason we feel we need to lie about. Often anger and aggression is associated with denial, which implies there is something very important at stake.

Under normal circumstances, not recognising someone and having no recollection of meeting them, often leads to roundabout means of trying to establish their identity. It is not uncommon for people to part without becoming any the wiser. It seems it is not easy to admit that you have forgotten. When we can’t find something we are sure we have put in a safe place, people may well accuse others of moving it or taking it. When our sense of competence is challenged, we certainly feel very uncomfortable, but we may also behave in a defensive or aggressive way.

People with dementia, with, among other problems, failing memory and altered visual perception, are likely to respond along similar lines but possibly in a more extreme way. There is the most important thing at stake: a sense of being a person who is able to make sense of the world around them. It is possible that it is better to deny something ever existed than to admit that you are failing to make sense of events at a very basic level. Trying to convince the person that they are mistaken often only makes matters worse. The person with dementia may be unaware of seeing things differently. What we see is real to us: perhaps the realisation that something is amiss comes primarily from the reactions of those around us. There are different levels of ‘realisation’ or ‘insight’: it can be expressed non verbally and perhaps sub-consciously through anxiety, defensiveness, anger and ‘denial’; or it can be experienced and expressed openly.

Take for example a family situation where one member of the family is untidy and always losing things, and another is more organised and gets fed up with repeatedly looking for their belongings. Then there is a time when the scattier of the two is sure that they haven’t lost the item, and the more organised person has this niggling feeling that they might know something about it, but does not or cannot own up to it. It may be that this person does not even consciously admit this to themselves, let alone anyone else, but may well express it non verbally by being more critical or more irritated than usual.

A more extreme example of this can be seen in Elaine’s behaviour. Elaine does not suffer from dementia but a severe psychiatric disorder, central to which was a very close but problematic relationship with her elderly mother. She could not live with her mother and yet could not live without her, and the solution to this for Elaine was to be unable to cope with independent living. An attempt to discharge her from hospital to a hostel was met with a non verbal expression of this problem. On a shopping expedition with another resident to buy food for fourteen people, she found herself to be the more competent and took charge almost without realising it. On walking back, the ‘realisation’ that she had coped, and therefore might have to live in the community separately from her mother, was expressed by vomiting repeatedly but unsuccessfully in the gutter. Likewise when Elaine was helping to cook the meal, this four foot ten inch, six stone woman, attempted to drain a huge saucepan of potatoes as if it was small, pan in one hand, collander in the other. Once helped with this, she picked up the two huge serving dishes full of potatoes for fourteen people, one in each hand, and launched herself across the kitchen with the ‘subconscious’ ‘intention’ of dropping them all on the floor to ‘prove’ she could not cope.

This story did eventually have a happy ending: Elaine was reunited with her mother, where she remains to this day. Her ‘denial’ was never confronted or commented on, but this understanding of the situation used to allow mother and daughter to find a way of living together peacefully. Facilitating Elaine to spend time at home without her mother there, led to greater confidence in all activities of daily living. Neither developed the ‘insight’ that they had found ways of leaving each other alone. However Elaine commented that when her mother "went on", she would listen for a bit, go and do some ironing, then come back after 10 minutes and she would have finished. Her mother commented that she would leave Elaine alone when she was cooking and "go and dig in the dirt".

People with dementia also would appear to ‘know’ at some level that things are not right, but some people may choose to deny this, and others may show ‘insight’ and talk openly about their condition.

Whilst it may not be an easy solution (there is no easy solution to caring for people with dementia) we are in a position to monitor and change our reactions and ways of communicating but the person with dementia (and each of us from time to time) is less or unable to do so.

A number of short case scenarios follow. These examples will be elaborated in order to illustrate some strategies suggested below.

Elvira was admitted to a psychogeriatric ward because of aggressive outbursts in the residential home. This 75 year old woman, a mother and a school matron, had become doubly incontinent but hit out when anyone tried to clean and change her. Unable to allow her to walk around dropping faeces, several nurses would have to hold her down, causing bruising. This situation was probably experienced by Elvira as assault. Attempts to toilet her regularly were not accepted by Elvira, and she would barge out of the toilet with "I don’t need to", and "bloody cheek". Elvira, her son, and all the nursing staff were understandably considerably distressed.

Edna, also on a psychogeriatric ward, was severely demented and was known by her care staff to lash out "for no apparent reason".

Gerry, who suffered from frontal lobe degeneration, was constantly trying to leave the ward (and often successful). When asked to stay, he would say that he was only going down the road to buy some tobacco. If prevented from leaving he would hit out with his stick, and get very angry.

Moira, a younger person with as yet undiagnosed memory difficulties, personality change and extreme anxiety, was refusing to stay overnight in hospital for tests. She claimed her problems were due to stress, redundancy and the menopause. She was persuaded to stay as a day patient and tolerated all but the neuropsychological testing. She emerged from 1 ½ hours of testing red faced and furious, refusing ever to return to the hospital and blaming her husband for bringing her.

Francesca, a young woman with an inherited dementia, refused to attend clinic appointments or allow any involvement from statutory or voluntary services. She refused to acknowledge anything was wrong with her, despite significant difficulties with language, memory, caring for herself or her family and the increasing tendency to fall. Her denial and refusal to accept help added to the strain for her husband who was caring for her, their two young children, as well as doing a demanding full time job.

Listen for clues in the person with dementia’s communication

For example, Elvira’s comment when taken to the toilet was "bloody cheek". This possibly implied that she felt it was degrading and undignified for a mature lady with a high standard of personal hygiene. Perhaps she felt it was a more fitting activity for a toddler learning to gain control over their bladder and bowels. Such a hypothesis had important implications for managing this woman’s incontinence. Instead of behavioural management by regular toileting, and drawing her attention to having been incontinent, she was approached with the information: "It’s time for your morning wash Elvira, would you like me to help you?" This was accepted readily, and Elvira co-operated entirely with getting undressed. When she saw that she had been incontinent she would cry and cry, but there was no aggression.

Edna surprised the staff who cared for her when they saw how she participated in a regular social group for people on the ward. For someone who was believed to be unable to communicate, she joined in familiar songs, smiled and made eye contact, and began to communicate in surprising ways. She made the comment "it is better to have loved and lost than never to have loved at all" in relation to a discussion about the death of close relatives. This comment was presumed to refer to her son who was electrocuted on the railway, but she never talked of him and was assumed to not be able to remember. She also made the comment in relation to a discussion about disability: "My brain is going up the wall". Perhaps the message here is we can never assume people with dementia are unable to participate, but look to promote situations in which they can function optimally. Perhaps, as for all of us in our every day life, ‘insight’ is not something we have or have not, but something we can have flashes of, and something we can bury to protect ourselves from insufferable pain.

Moira, when explaining her memory problems as due to the menopause, redundancy and stress, seemed to be conveying an important underlying message: ‘I cannot and will not entertain any other explanation of my difficulties. I do not have the same problem as my mother’. She had however agreed to come to the hospital, and was still prepared to undergo all investigations provided she did not have to stay overnight. By asking for more information about her problems as she saw them and taking them seriously, by arranging investigations according to her wishes, perhaps Moira felt more in control of the situation. All the investigations she agreed to were completed without any problem with the exception of neuropsychology. This tends to confront the person with their difficulties and in many cases makes people very angry or very sad. It is not always possible to avoid upsetting people, as investigations are central to diagnosis, and diagnosis is the key to accessing appropriate services, however there are strategies which can be used to cope with the very strong feelings that may surface for the person with dementia.

Francesca was walking to the local shop with me, talking of her work as a colour technician, and how she intended to return to work when the children were older. Currently her children were the priority, despite the fact they were in full time nursery care as she could not be left alone with them. When we arrived at the shop and she had selected what she needed, she handed her purse to the shop keeper in order to pay for her shopping. This seems to illustrate that she fully anticipates her difficulty making sense of money, and probably also that she is unable to look after her children or go back to work. She was not prepared to admit this openly, let alone talk about it, needing above all else to maintain a ‘normal facade’. She had watched her mother deteriorate with this disease when she was growing up, and must be very frightened indeed. ‘Denial’ could be seen as the most important mechanism she has for coping with her situation.

Some other comments follow which convey something of the subjective experience of dementia, and may be useful in understanding the experience of others:

"I can’t think very well, but I feel a lot". This woman was in the advanced stages of dementia, with considerable management difficulties in that she would shout and scream at people and was constantly on the move. This comment could be seen as an invitation to talk about her feelings, a request to have them acknowledged and expressed, but also perhaps is an indication of part of the reason for the symptoms of restlessness, agitation and irritability so often seen in people with dementia. We may notice these things in ourselves when we are preoccupied or very distressed about something.

Do you miss Mickey? 
"Yes I miss him briefly"
What do you mean you miss him briefly?
"Well I only see him briefly, so I only miss him briefly".
Sometimes people with dementia seem to make comments that do not make sense. This gentleman’s short term memory was very poor, and he was very disturbed by his condition. He seemed to be very sad when talking of his dog, Mickey, as if robbed not only of his presence but his memory too. This gives a strong sense of memories being very temporary: on the one hand this may mean that the person is not remembering sad things, but on the other hand the memory is engaging feelings but is not present long enough to begin to deal with them.

Compensate for deficits

Given the person with dementia has difficulty modifying their behaviour, strategies to alter the experience of events may be more effective in changing behaviour. The following suggestions of strategies to compensate for neurological problems aim to help facilitate communication, allow the outward appearance of ‘normality’, and therefore preserve the dignity of the person with dementia by not making the difficulties they are facing public. It is difficult to test for some of the difficulties that arise in the dementias, but if we start from the assumption that a person’s behaviour makes sense in light of their view of the world, we can ask ourselves the question:

Under what circumstances would this behaviour make sense?

It is likely to be obvious that someone is unable to remember recent events, but not necessarily, particularly in the very early stages when the person may be very adept at covering up, or in the late stages when they are communicating very little. Perceptual impairments are by their very nature less obvious, so it is helpful to know what kinds of problems are possible in the dementias. We need to be very flexible in our thinking and observe carefully the person’s response to their environment. Not only does the person see things in a different way but perhaps there is a parallel in the way they hear things, certainly auditory hallucinations are common and the person may well be responding to something internal when they talk. There will therefore be a lot of guesswork involved. The more this approach to behavioural problems in dementia is used, the more of a repertoire of examples is built up, and the more informed our guesswork becomes.

Edna used to hit out with her unparalysed arm whenever approached. Edna is an elderly woman, in her 70’s at the time, confined to a wheelchair which she was unable to operate herself. With age, peripheral vision deteriorates significantly, consequently two elderly people sitting next to each other may well be unaware of each other’s presence. Likewise hearing deteriorates, causing difficulty hearing people approach and difficulty localising sound. These deficits might lead to reflex reactions to defend herself when repositioned after slipping forwards in her wheelchair. If you do not see or hear someone approaching and hands are laid on you, it is an understandable reaction. This hypothesis was adopted and staff encouraged to approach Edna from the front, and to alert her to their presence both verbally and through cautious touch if she was asleep. Edna was sometimes verbally aggressive, but never hit out again.

Some suggestions of strategies for compensating for memory and language problems follow:

Supplying information in your communications eg "hello it’s Clare from…it is time for….." Supply information in a natural way to provide the person with plenty of cues to orientate themselves. The person may well be aware that is what you are doing but will be grateful for any assistance in keeping up a normal facade. Give instructions in small chunks as the knowledge of the order in which something should be done, the understanding of language, memory for long instructions, or the reason for doing something may be impaired.

If you need to repeat things, instead of simply repeating what you said, try saying it in a different way, try cueing the person into the topic or general gist of what you want to convey. The more information you give, the more help in boosting their understanding you will achieve.

Make use of non verbal cues: the understanding of language may be affected and gesture such as showing, pointing, even drawing, will help to boost comprehension and word finding.

If the person loses the thread of their conversation, try reflecting what you have understood. This takes the load off memory, allowing the person to build on their message and facilitate retrieval of what they were trying to express.

If the person with dementia has problems finding the right words, try giving them time to retrieve the word, reflect what has been said already and try giving alternatives for the word sought. Try not to speak for the person.

‘Gut’ Memory

People generally remember things better that they feel strongly about, and the same seems to be true of people with dementia. People with severe short term memory difficulty often ‘remember’ people and events that are associated with both good and distressing feelings. For example the speech and language therapist who arrives on the ward is often surrounded by patients wanting to chat, and the nurse who had to give them an enema or clean up after their incontinence will be spotted across the room and threatened with their stick. They may not remember what was done, but will remember that is was a good or bad experience

Oliver Sacks (19) wrote of the man with severe amnesia who ‘remembered’ the experience of shaking his hand with a drawing pin in it. Whilst he could not recall the event, he refused ever to shake hands with him again.

‘Gut’ memory plays an important role in making sense for everyone, and for people with dementia it is perhaps still as active?

Touch and non verbal communication

So much of the way we communicate is automatic and is acquired from birth over our lifetime. We get a sense of what someone is like, how they are feeling, whether we trust them without necessarily exchanging a word. Non verbal communication through touch, facial expression, use of colour and style of dressing, posture and positioning, tone of voice are just some of the ways we communicate all the time. When communicating with people with dementia we need to bring non verbal communication more within our conscious awareness in order to use it to facilitate making contact with people with dementia.

‘Denial’ is often described as a feature of the early stages of dementia, along with defensiveness and blame, anger and aggression. These kinds of behaviours are likely to keep people at a distance, at a time when people with dementia are very frightened and uneasy. The person with dementia often shares the widely held view that dementia is synonymous with stupidity, and loss of respect and dignity. In my experience the use of formality, such as handshakes and use of titles or asking the person if it is all right to use their first name, goes a long way towards helping the person retain their dignity. In some cases people hold on to your hand, others drop it quickly. In either case dignity is preserved and for some comfort is gained.

When the dementia is more advanced touch becomes very important, to comfort and alert the person to your presence. Along with ensuring you have made eye contact prior to speaking this will be a key strategy for facilitating communication as the condition progresses.

Reminiscence

People with dementia find it easy to express opinions about life issues, can reminisce about their life, comment on the here and now, but find it difficult to talk about the immediate past. The problem for many people with dementia lies remembering new information. For people who are in ‘denial’, reminiscing, asking their opinion about something important to them, avoids confronting them with their difficulty, will make them feel good, and can serve as useful ‘safe ground’, when the situation is difficult to deal with.

Reality Orientation

Whilst up to this point I have suggested that correcting someone and confronting them with their deficits is something to be avoided, particularly when the person with dementia is not acknowledging any difficulty. In the Cochrane reviews (Spector, Orrell, Davies, Woods 1998) there was found to be evidence for the benefit of Reality Orientation but with the proviso that these may only be short lived and would need to be incorporated into a more long term programme, and that it’s success may be dependent on it being used at the appropriate time, by a sensitive and experienced practitioner, to a receptive patient. Some discussion as to the times it might be appropriate follows.

There are ways of orienting someone in a subtle manner without pointing out a ‘mistake’. For example by introducing plenty of cues in conversation as you go about your business in light of what you know about the person’s difficulties. When people are unsure where they have met someone they are talking to, often they will ‘fish for clues’ in conversation, and ask questions. When talking with someone with dementia, you can do the fishing for the person, by littering your conversation with clues, by saying out loud some of the things we can usually take for granted.

It is, however, possible to overdo this, as was the case for a man whose wife has Alzheimer’s Disease. They attended a club regularly on a Wednesday morning, and he would call and say "Are you ready?" which always ended in an argument. When he said "Are you ready? It’s time to go to the club", his wife could get her coat without being reminded that she couldn’t remember what it was they were doing, without getting flustered and irritable. However he at times took this to extremes, for example in the supermarket he identified aloud each item as he moved them from the basket to the checkout: "Here’s the bread, the milk…..the butter…" Apparently his wife nearly hit him! Communicating is something we have learned over a lifetime, and we don’t, as a rule, need to stop to think too carefully about how and what we say. It is difficult to change the way we communicate and even more difficult to do this without making it obvious. It is important not to be discouraged when it goes wrong, but to reflect, discuss, even laugh, and then try things differently. It is nearly always appreciated. This man’s wife came for counselling and commented in relation to her husband’s changed understanding of her difficulties: "What have you done to him? He’s wonderful!"

Sometimes the person with dementia will ask directly for information. There is a natural tendency to seek out and become aware of things only to the extent that can be dealt with at the time. It may be that the person with dementia will do the same, and seek an understanding for some of the difficulties that they cannot ignore. I would contend that it is important to be honest and open about that which is asked about. By this I don’t mean a formal diagnosis, but an acknowledgement of the difficulties the person is facing and why. There may well be a catastrophic reaction, but this is understandable. What seems to be important is to be able to make sense of their experience.

For example Francesca, whilst refusing to acknowledge her illness and prognosis, would sometimes ask her husband about her difficulties. Whilst she was repetitive and often said and asked the same thing endlessly, when he explained that it was part of the problem of her "brain shrinking" she never asked about the same symptom again. She developed a problem with feeling excessively hot all the time. She took her clothes off, turned off the heating, opened windows, was aware no one else felt like this, and was very agitated. Perhaps she had a temperature? When the problem was explained as a feature of her condition, she shrieked and left the room, was heard to be crying next door, but then returned much calmer and more able to focus on other things. It seemed important not to minimise the distress she was feeling by avoiding mentioning the real reason for her symptom, and in the long run she gains more comfort from being able to understand that she is not ill, but it is part of her condition.

Some questions seem to be straightforward requests for information, for example "What day is it?", "Where am I?". Others are more difficult to answer "Who are you?" (when you have been married for 40 years), "When is the bus coming to take me home?" (when the person is in continuing care). When answering questions, it can help to think carefully about what the person is actually asking. What answer would help to orientate that person in Time, Person or Place? If you have difficulty keeping track of time and remembering recent events, but your memory is improved for things that engage your feelings, then it will make more sense to reply to "What day is it?" with "Today is Monday, the day you go to the supermarket with your sister". "Where am I?" could refer to the building, the town, the country, or if you have a memory problem it could refer to where am I in the course of my life?, what am I doing here?, where is my life going? Depending on how you interpret the question, the answer will vary. Responding to disorientated communications will be discussed in greater depth in Part 3, Confusion and Disorientation.

Respond to and acknowledge the feelings behind what is said

For those people who are not able to acknowledge their condition, it is important to exercise caution in asking how they are feeling. We tend to deny things when there is a very good reason to; feelings are likely to be strong and perhaps not easily controlled. Their position is that there is absolutely nothing wrong, and perhaps this is the only stance the person can take and retain their composure. As a general rule, therefore, it is better to avoid discussion of feelings or problems unless invited.

Elvira broke down in tears each time she discovered her incontinence. At this time it was entirely appropriate to talk about her feelings, how awful it must be for her, whilst offering to help her clean up and choose some clean clothes.

For Gerry who regularly tried to leave the ward, "just to go and buy some baccy, I’ll be right back". If it was suggested he might not be able to do that, or that he might get lost, Gerry would claim this to be nonsense and walk off. If physically prevented from leaving and the door locked, he would beat the offending person with his stick. Talking of his feelings about not being free to come and go; the difficulty for the staff in that it was their job to make sure no harm came to him but they had other residents to consider; and a promise not to let him run out of tobacco, was met with much more reasonable behaviour.

Distraction

Distracting someone with dementia can be a very useful strategy in the short term, particularly if you have discovered some ‘safe ground’.

For example, Moira was very angry when she emerged from neuropsychology, having been brought face to face with tasks she found difficult but on an everyday basis was either unaware or could ignore. She looked greatly relieved, and her mood switched when asked advice about cats. She had a cattery and many cats of her own, as well as working as a vetinary nurse for some years. This was ‘safe ground’, where she was still an expert, in contrast to the way the tests had made her feel.

It is interesting that for some people this seems to work well and for others the underlying feeling of distress remains despite the conversation moving on. Whilst it is a very valuable strategy to relieve distress during crises such as these, there may well be times when addressing the ‘truth’ will have to be considered, as with Francesca over feeling excessively hot all the time.

Collusion

Going along with a person’s mistaken beliefs is a tempting strategy, but can cause more difficulty than it will help. People in the early stages of dementia are very challenging to care for, the ground rules always seem to be changing, and you are always wrong. Try to seek more information about the person with dementia’s view of the situation, accept this is true for them, but you do not have to share this view. Talk in terms of how you would feel if you were in their shoes, rather than talking as if it were the ‘truth’. In many cases this will be a question of how you phrase your responses.

Colluding with Francesca might involve helping her to plan for her future return to work, as if it might happen. Reality Orientation might encourage her to take a realistic view that this is not going to be possible. Reminiscing and asking about her expertise and her role does not force her to recognise what you know to be the ‘truth’, nor colludes with the way she wishes things were, but is likely to promote conversation, make her feel good, and allow her to ignore the prospect of her deterioration.

Conclusion

Caring for people with dementia is both stressful and challenging. There are ways to alter our own communication by attempting to stand in the shoes of the person with dementia and understand the difficult task they face in living with this disease. When we are successful in making a difference, it is an extremely satisfying occupation.

References

Morris, C. (1999) Communication Problems in Dementia Part 1: the Experience of Dementia in The Journal of Dementia Care July/August 1999

Sachs, O. ( ) The Man Who Mistook His Wife for a Hat

Spector A. Orrell M, Davies S, Woods B. Reality Orientation for Dementia (Cochrane Review) in The Cochrane Library, Issue 2, 1999. Oxford: Update Software.

Part 3: Confusion and Disorientation

(In Preparation)

Part 4: Delusions and Hallucinations

(In Preparation)