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  • Dementia: Communication and Early Detection

    Aging and death are subjects we would rather not think about let alone talk about especially when the early signs indicate something serious like Alzheimer's disease or one of the other degenerative brain diseases is happening to you or your loved-ones. To many, dementia means loss of memory, the inability to manage your own affairs and loss of dignity. Eventually it will lead to death and there is nothing we can do about it as there is no cure.

    One of the greatest problems with dementia is the frequency of misdiagnosis and inappropriate treatment. Dementia can be viewed with fear and uncertainty or it can be understood and strategies and treatments can be developed as soon as we know what is happening. Leaving it can make matters worse; including not treating other problems that can look like dementia or that can make the symptoms worse. Most importantly is the need to be guided by the person with dementia as to what they want, what preparations they can make for their care and to protect their interests before it is too late.

    A short while ago cancer was viewed in the same way: a death sentence as there was no cure and no hope. And it was not that long ago that cancer was rare and people mostly died of other illnesses like pneumonia, tuberculosis, polio and other infectious diseases. But then people often only lived until there 50s and an old person was one who lived beyond their sixties.

    Anti-biotics and other medical advances meant that people rarely died of these diseases and heart disease, stroke and of course cancer became the diseases that caused fear and apprehension because they were going to get us. But then again we were living much longer and people expected to live until they were 70 at least.

    It will not be many years before dementia will be the biggest cause of death rather than heart disease, stroke and cancer and it is simply that modern science has meant we can escape their clutches; but, as we live longer, waiting for us are new diseases and dementia is the most feared.

    For anyone over 50 there is a chance of developing one of the degenerative diseases of the brain, often called Dementia, or Senile Dementia or Alzheimer’s disease, the most common type.

    Dementia is defined as an acquired syndrome of decline in memory and at least one other mental capacity such as language, orientation (visuo-spatial), or planning and thinking (executive function) sufficient to interfere with social or occupational functioning in an alert person. “Mild Cognitive Impairment," is a more mild condition not associated with functional impairment but sometimes progressing to dementia. And of course we all tend to become forgetful and vague as a condition of aging.

    Between 60 and 70 percent of individuals with dementia have Alzheimer's disease; about 20 to 30 percent have either vascular dementia or a combination of vascular dementia and Alzheimer's disease. Dementia causes a high burden of suffering for people with dementia and their families. For those with dementia, it increases dependency and complicates other medical conditions it can lead to anxiety and depression. For families, it is a stressful time not knowing what is happening or what to do and how to create the time needed to care for loved ones.

    Age is the strongest risk factor for dementia: 3 to 11 percent of people older than 65, and 25 to 47 percent of those older than 85 have dementia and it estimated that the proportion of the population aged over 65 will soon double from the present 13%. First degree relatives of patients with Alzheimer's disease have a cumulative lifetime risk of 39 percent, approximately twice the risk of Alzheimer's disease in the general population. In other words we can inherit the disease. Cardiovascular risk factors such as high blood pressure (hypertension) are associated with an increased risk of both Alzheimer's disease and vascular dementia.

    Dementia is often associated with loss of memory; however there are different types of dementia and not all show early memory failure. Sometimes onset is marked by changes in mood or behaviour, and often, so gradually we find it hard to connect this with a disease like dementia. Importantly there are other reasons people start to forget things, such as age, depression, stress, hormone and vitamin deficiencies, physical ailments like brain tumours and infections and all these can be happening separately or together only making it even more confusing.

    While dementias are generally difficult to treat, or even to delay onset or slow up the progress, some dementias respond to treatment and other problems resulting in dementia type symptoms can be treated. There are at least five sub-types of dementia and some are more treatable than others.

    For example, physical exercise, diet and mind exercises are thought to delay on-set for those at risk. One study suggests that moderate alcohol use and gardening might guard against getting dementia. Certainly being over-weight, having high blood pressure and reduction in lung capacity (smoking, respiratory disease) are associated with increased risk, while keeping the brain active like learning a foreign language, is believed to protect against dementia.

    Also depression and worry is related to increased risk of dementia. A whole range of treatments exist for risky behaviour like over eating or smoking and psychological problems like depression and anxiety, including psychotherapy and medication.

    While only one in 20 people will develop dementia in the 60s, although by the time they reach their 80s this can become as high as one in four, it is a very costly and disturbing process for both those with dementia and their families. In Australia there are now some 247,000 people who are sufferers, however in 30 years time this will be over 1,000,000.

    There are some very good reasons to talk about dementia because it is now known that finding out early can have many important benefits. Escaping talking about death is not one of them. However, most importantly there are many things that can be done to slow its progress. For example, exercise and socialisation have been found to increase functioning and delay onset; some medications can cause dementia-like symptoms or make it worse; high blood pressure and cholesterol can also increase the risk of dementia; diet and nutrition can be important as well as remaining active or even having a regular alcoholic drink. Despite the current lack of effective treatment, recognition of early-stage dementia may offer substantial benefits. These include avoidance of inappropriate treatment related to misdiagnosis and time for you and your family to address issues of support services, accommodation and financial, legal, and medical care planning.

    There are many preventable causes of dementia or things that share some of the symptoms associated with dementia and these need to be thoroughly investigated and treated. They include: an abnormal growth of tissue either benign or sometimes malignant like the various tumours or cancers; high or low chemical levels in the blood (glycaemia, natremia, calcernia), vitamin deficiencies, thyroid disease, hormone level changes, kidney or liver disease, head injury, alcohol and toxic chemicals (heavy metals and pesticides) and a range of brain diseases like meningitis, auto-immune disease like lupus; both prescribed drugs (anticholinergics, antidepressants), alcohol and illicit drugs, mental illness and many others.

    In discussions of dementia knowing these things and being able to communicate that while we still can, can make a big difference to how they are treated. Getting treatment is important and we may even have to educate our doctors because many don’t know this and many are reluctant to talk about it because they feel inadequate in not being able to help and because they know how much sadness a diagnosis can cause. As well as talking about what we as professionals can provide in a later section of this book I spend some time talking about the importance of good communication with the person with dementia as the first step in providing adequate and respectful treatment. Carers may benefit from reading this section and also in determining if the professional you go to is on the job.

    An issue of fundamental importance in talking about dementia is to assume competence and to focus on the abilities of the person who develops dementia. In doing this we are taking care of the feelings of the one we care about. To focus on symptoms or disability and to take over the person’s life is demeaning and destructive of their sense of self worth.

    There are a few basic principles for good communication and building of trust with someone, who is often defensive about what is happening to them, who are often in a state of denial, and who worry about your motives for wanting to know. In some families discussion of these personal issues are out of bounds. Some families avoid talking about or experiencing emotions together. But now is the time to enter new territory and to find a way to talk about some really important stuff that can’t wait.

    The first principle is empathy. This is the capacity to avoid thinking that you know how they are feeling or experiencing the dementia, instead it is an attempt to step outside your own concerns and to be with them in the apprehension, fear and sense of loss and despair. This can be conveyed by our genuine interest in what they have to say. To do this we maintain attention, we are open in the way we present ourselves, we signal that we have heard by affirmation, by repeating what we believe they have said, by asking questions to understand the specific meaning attached to words and non-verbal signs. We signal our positive regard for the person by making them aware that we see their good qualities, not just the bad things that are happening and we refrain from giving unasked for advice and discounting their needs and preferences. Often the person with dementia does not understand or can be terribly afraid about what is happening to them, or they may be worried about other’s reactions and what others may have in store for them, or about being an unwanted burden and they make up stories that help them make sense of things unknown.

    This is not lying or being devious; this is often the best they can do to make sense of something that is frightening. To try to make sense of something often means that it seems less fearful. Trying to understand the reason for a person thinking or doing something that may seem non-sensical is a measure of the level of empathy we can have. By being dismissive or imposing our ‘rational’ thinking we demonstrate contempt for the person we want to help even if we never meant that to be the case.

    There are very good practical reasons for developing rapport or empathy and that is that we develop trust. This is the second principle of effective communication for without some measure of trust we cannot feel comfortable about being vulnerable as it can be used to hurt us. It tends to reduce levels of anxiety and enables us to ask the difficult questions, and to allow the person with dementia to open up to the point where they may be able to think more clearly about the reasons for their behaviour and to start to talk about their feelings.

    More than this, it allows us the opportunity to confront the person with the reality of what is happening and the need to do something. This is the third basic principle. Confrontation does not mean that what we say is negative, hurtful or derogatory, but it has the capacity to make clear what seems apparent but is not being talked about. Now this can be risky as we may be wrong about the point we want to make or what we might want to achieve.

    However, if we have developed a good level of trust and it is understood that we have acted in good faith then this may not be a bad thing and in fact it may add to what we know, or do not know. The very act of speaking frankly and showing the courage to take a risk can reveal our vulnerability. The level of intimacy can be deepened if the person you care about has answered without being defensive, feels safe in talking openly and to be vulnerable, just as you are. This means that effective communication is possible, the nature of the relationship has deepened and a greater level of mutual respect has occurred.

    Advice-giving is not the best way to build rapport. Often it signals that we don’t have the time or patience to stop and listen, we don’t really want to understand what is happening from the others point of view, we discount their attempts to deal with the problem and that we know better. In the end it is often insulting and demeaning, suggesting that the other does not have the wits to work out what to do for their welfare. It assumes far too much knowledge.

    On the other hand, having built a trusting relationship it may be timely to look at options and to involve the person with dementia in a meaningful way in discussion of what, for everyone, can have serious consequences if left unresolved.

    At this time it is possible to talk about failing health, loss of mental faculties the need to depend on others for survival, the loss of dignity and independence and death. Preparation for the inevitable decline and then passing from this world awaits us all, but as it draws near it assumes a level of gravity that is easily ignored when we are young and healthy.

    Issues like a drawing up a will and choosing an executor, arrangements for income protection, possible sale of assets, and where to live so that adequate care is available, perhaps appointing an enduring guardian and someone to assume responsibility for financial and other legal responsibilities can all be planned for in an orderly way. All this allows full participation by the person with dementia if done earlier enough with the assurance that their desires are honoured and their rights protected. Also a realistic appraisal of the stage of dementia, what other health issues are present, the need for accurate assessment and treatment and the role of health professionals can be considered and acted upon in a timely fashion.

    Many people worry that they are getting dementia when in fact the forgetfulness, getting a bit grumpy when our routine is changed or making poor decisions at times is typical of our advancing years or it may be that we are under stress, suffering some loss or becoming depressed. When this becomes consistent and noticeable to others it may be that we are suffering what is called Mild Cognitive Impairment and there can be many causes of this including depression, medication, stress, recent major surgery or a general anaesthetic and many others. In about 10% of cases it can be the precursor of dementia.

    When these signs occur it could be the early stages of dementia and now might be the time to act, to talk about it and make decisions to change the course of events and take some control of it.

    The fact is we have been programmed to forget things, or at least not to be consciously aware of much that we experience even a short time before. This makes sense, as, if we recalled everything we did our minds would become cluttered with stuff that is useless and the things we need to know would get crowded out. To give some examples you may relate to: last month most of us would have experienced many pleasurable things: a smile from someone, a nice meal, a chuckle at a cartoon we saw in the paper, feel the sun on our face, be intrigued by an interesting program on TV, hear a good news story on the 6pm news. Typically, every day living involves feelings that are positive if we care to notice: but few of us could recall the detail: who smiled at you and why, what joke was that, what days were sunny and what days were gloomy, what did you actually eat that tasted so nice, what was that program among many that you liked and what was that story you heard on the news. Unless of course it was something really special or something we have experienced a few times recently, otherwise it comes in and goes out. And tomorrow we will sit down to have another great meal or laugh at a new, or old, joke, watch our favourite TV show. We seem insatiable as each day we need to get our share of good feelings as if we had never experienced these things before because we have forgotten the feeling and the event.

    So what use is this and why do we continually need to experience new things: surely sunshine today is as good as many other days; this meal no better than many others, that present one of many we have received every year of our lives. Why is this one special, why do we need to top up our ‘feel good bank’ when we can’t even remember what we did a few days earlier?

    It seems we have a separate memory system that stores up the good and bad emotions we experience. If we have, or choose to notice, lots of good feelings we tend to be positive and optimistic and we tend to expect life to be good and all the negative things don’t seem to matter too much. However, if we only experience or choose to focus on negative emotions we tend to be gloomy and pessimistic and we expect the worst.

    As our ability to remember things deteriorates as we age our emotional memory is still working hard. So it doesn’t matter if we can’t actually recall the nice things like a visit from our grandchildren and a birthday cake, a kind word of encouragement, a compliment, an outing with our family, because for a time we feel happy and loved and it tends to sustain us.

    Even when our minds are in tip-top shape we can’t remember what presents we got last year or going on some outing or seeing a movie, but we still do it and we want more. If we have none of these things, but only have experiences that leave us feeling hurt or lonely or unwanted then we become depressed and sad, even if we can’t remember who did what to us, or why we felt cold or alone, but that we just did and it grinds us down. This is even worse when our lives are controlled by others and we cannot do things without support or permission. We cannot just make a decision to do something just for the fun of it to feel good because we can’t. As we become older our lives become constricted by lack of mobility, lack of resources or just plain fear and uncertainty about being able to do things on our own.

    By the time we get into our 60s it’s pretty typical that we forget names and appointments, but remember them later, we misplace things like our glasses or keys, but they turn up. The only difference from when we were younger is that the time between doing and forgetting becomes shorter and the amount we can keep in mind at one time is reduced: and it then becomes annoying.

    However, one of the most common signs of dementia, especially related to Alzheimer’s disease, is memory loss, especially forgetting information we only recently learned and that we to act on. Although the nature of problems will vary between individuals and even within the person, memory will tend to be a feature of any form of dementia and it will get worse over time. Depending on the type and progression of the disease it may be worse for some forms of material rather than others, for example verbal and non-verbal information. Other signs may include forgetting important dates or events, asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to be able handle on our own. It is embarrassing if we are wrongly accused of stealing something only for it to be found later. Problems with completing tasks and functioning, may not just be about a failure to recall what to do, but can often be attributable to an inability to self-monitor for errors, or an inability to develop strategies to perform a previously learned task.

    Most of us lose track of what day of the week it is, particularly when we don’t have a set routine, like going to work each day. From time to time we become tired of obligations such as work and family commitments and time out when these things are not so important is important for our proper functioning. We tend to do this when we have lazy long weekend or when we are on holidays for example. When we are under pressure or just tired we may also become aware that we are making poor decisions every now and then. This becomes more obvious if we are under a lot of stress.

    However, people with dementia can lose track of dates, seasons and the passage of time and they may make poor decisions about their money like spending money on unwanted objects or giving money to strangers and they lose track of once valued friends and may stop doing things with them that they once enjoyed. Sometimes they may forget where they are or how they got there or how to get home. Poor information processing, fatigue and not being able to focus attention or poor concentration can also effect the capacity remember and act accordingly.

    As people age their eyesight deteriorates, not hearing clearly becomes a nuisance and they become physically weaker. However, the early stages of dementia may include problems with reading or finding the right word or using the wrong word when we are speaking, judging distance and feeling unsteady on our feet, bumping into objects, particularly on one side of their bodies or perceiving changes in tone or colour that are not related to physical ailments. Some people may start to neglect hygiene and grooming, not bothering to shave or missing areas or not worrying about doing their hair. We may not notice, or not care anymore about stains on our clothes or grime on plates or cutlery. These can often be a source of embarrassment or unease when relatives visit.

    As people age it is inevitable that our friends begin to leave us and sometimes we lose a partner who we have become to rely upon. They are also aware of their diminished capacity to be productive and sometimes feel that those around us treat them with disrespect, including health professionals who often speak as if they are not there. However if they become confused, suspicious, depressed, fearful or anxious and easily upset at home, at work, with friends or in other places for little apparent reason then it may be that these are early signs of dementia. On the other hand changes in mood can be related to medications they are taking, becoming depressed by the change in our functioning and independence or because of grief when we lose those close to us. Loneliness can be a significant problem when our partner was the main companion and upon whom the other relied. This tends to impact more on women, who are suffering from early dementia, as they often depended on their husband, which often meant that relatives have been kept unaware of their declining mental capacity, and are therefore less able to cope with the disease after he has died.

    Research indicates that Depression and Anxiety can cause memory loss, among other things, and this is commonly referred to as pseudodementia. There are a range of treatments to help with the common psychological problems, but you need to know they are not early symptoms of dementia as apathy, considered a symptom of dementia looks very much like depression. Other physical illnesses can cause dementia like symptoms. For example, infections or post-operative delirium can be confused with dementia symptoms.

    Often your memory problems can be just a part of the normal ageing process. We tend to think and react more slowly as we age, but sometimes we can do our best work when we use all the experience we have gained to inform us, as long-term memory is rarely affected by the ageing process and may in fact improve. Sometimes we find it hard to learn new things or to plan as well as we used to, but we can still enjoy many aspects of our lives despite the declining years. Worrying needlessly only takes from our lives and may turn into depression and anxiety.

    As we age there is a good chance, especially if we are female, that we will lose our partner. A sense of loss is at the centre of dealing with a loved-one with dementia, but also for the person with the disease who becomes aware of failing capacity to cope and mange their lives. Therefore feelings of grief can be a significant issue as we find it difficult to deal with the reality dementia and what it means and sometimes a psychologist or psychotherapist can help you through this difficult time of loss and adjustment.

    Language and communication can be become significant problems that are common to different forms of dementia. Effectively interventions to improve functioning can be compromised when communication breaks down. Issues of concern include word finding problems, difficulty focussing on the topic, poor turn-taking, talkativeness, difficulties sustaining conversation because of difficulties forming ideas, difficulties following conversations where there is noise or when many people are talking at once, lack of tact and inappropriate comments, trouble understanding abstract ideas and repetition the comments. Other problems include an inability to pick up on non-verbal cues, difficulties maintaining a sense of context and problems with logical argument. Attentional and concentration deficits can contribute to the perception that language is impaired if they cannot follow a conversation or deal with distractions. Communication can be further compromised by unclear speech, speech rate and volume.

    Some forms of dementia are marked by poor interpersonal skills and distressing behaviours including outbursts of anger or inappropriate laughter, inappropriate touching or sexually explicit behaviour. Anti-social behaviours such as impulsivity, self-centredness and attention-seeking and manipulative behaviour can be very distressing for carers as it often represents changes in the behaviour that is quite different before they had dementia. Similarly apathy and a lack of motivation can be confusing and lead to conflict.

    Overcoming and dealing with these difficulties can be very challenging for families. There comes a time when intervention and support from psychologists, other health professionals and other agencies will become necessary.

    From “Is Dementia and Bigger Word than Cancer”

    Dr Ross Colquhoun



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