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An introduction to sensory hallucinations in older people Do you see or hear hallucinations, or do you know someone who does? Do you have a visual or hearing impairment, or both? Do you know someone who does? There may be a simple explanation… Dafydd “These hallucinations can be very distressing when you don’t know what’s going on. “I read a lot as I live alone. I enjoyed reading but one night an arm appeared around my shoulder as if trying to take my book. I was scared. I would turn around but there was nothing there. I also play the piano and I can sometimes hear someone singing.” 2 Visual hallucinations Charles Bonnet syndrome Charles Bonnet syndrome (CBS) is a common condition among people who have become visually impaired. It causes people who have lost a lot of vision to see things that are not really there, known as visual hallucinations. The condition can affect anybody whose sight is failing at any age but is most common among older people, most likely because this is the largest group of people with visual impairment. Visual hallucinations can affect people with eye diseases across the entire spectrum – from cataracts through to retinitis pigmentosa and macular degeneration. Although there has been limited research carried out regarding CBS, it has been estimated that between 11 per cent and 15 per cent of people with moderate or severe visual impairment have experienced visual hallucinations. ■ What kinds of hallucinations occur? The answer to this is just about anything and everything. The most common image is a geometric pattern, but a wide array of often bizarre hallucinations have been ‘seen’ such as disembodied faces and animals among many others. These hallucinations are always brilliantly clear in comparison with the blurred perception of real objects a visually impaired person will experience. ■ How long do the hallucinations last? These images can last for periods ranging from seconds through to hours at a time and typically appear without any kind of trigger. For some people though they may be triggered by things like tiredness, stress and both high or low levels of lighting. Hallucinations tend to begin soon after someone’s eyesight has deteriorated and early on will be at their most frequent and for the longest periods. Over time most, but not all, people’s hallucinations will become less frequent and may actually stop. Recent research suggests that a large proportion of people experience these hallucinations for five years or more. 3 ■ What causes the hallucinations? There has been limited research into the causes of CBS and as yet there is no real agreement of the exact cause or causes. It is widely believed to be a normal response of the brain to reduced visual input. ■ What problems can CBS cause? The main potential problems appear to relate to people who develop CBS fearing that they are developing mental ill health but they are more likely to feel this way if they have never heard of the condition or have not had the syndrome explained to them. Until this point, and especially when the hallucinations first begin, this can be a frightening time. The person with CBS may often wrongly fear that the hallucinations mean that they have developed serious mental health problems. They should be reassured that this is not the case and that it is not the result of any other problems such as dementia. A few people with CBS report that they actually find their hallucinations to be a pleasant experience while most are indifferent towards them. About a third find the experiences distressing and unpleasant. People whose hallucinations are very frequent and hinder their day to day activities are more likely to find CBS unpleasant. People with CBS may not tell anyone else about it. ■ Are there treatments available? If somebody is concerned about their CBS they should visit their GP. Some GPs will be unfamiliar with CBS so it is worth taking along this information. The GP may recommend some tests to be sure that it is in fact CBS and not something else that may require treatment. People may also seek some counselling if the hallucinations are causing distress. Currently the best treatment is probably the provision of information and reassurances to the person with CBS that their experiences are far from unusual and that they are not facing issues related to mental health problems or dementia. 4 There have been examples of drugs successfully treating CBS but there is currently a lack of evidence as to which might be the best one to try. There are some practical ways for a person with CBS to help manage their hallucinations: • Some form of eye movement, shifting gaze to the left and right alternately, can make the hallucinations go away, at least for a short while. • Distracting yourself, such as getting up to make a cup of tea, or going out for a while works for some people with CBS. For unknown reasons hallucinations most often occur in times of quiet restfulness so doing something to occupy your brain may help. • Increasing the light you are in can be helpful as hallucinations are most common in dim lighting. • Joining a social group may be beneficial as social isolation is thought to be a contributory factor to CBS. ■ Treatment in the future A five year study of CBS has been launched by King’s College London and South London and Maudsley NHS Foundation Trust with the intention of creating a comprehensive set of guidelines on the clinical management of visual hallucinations to be made available to both clinicians and patients by 2017. They will also create an evidence-base from which to plan future NHS services. Auditory hallucinations ■ What are they? A range of sounds that are not actually there can sometimes be experienced by people who have lost some or all of their hearing in later years. These hallucinations range from simple sounds (often described as tinnitus) to more complex sounds such as music. It can come as a surprise to people as tinnitus is more commonly known as ‘ringing of the ears’ 5 caused by exposure to loud noises. This view can be unhelpful as it does not take into consideration the wide array of different sounds someone with tinnitus might hear. Nor does it acknowledge that tinnitus often occurs as a consequence of hearing loss. Tinnitus as a result of ageing is poorly understood, but what seems to happen is that signals are sent from the ear, down the ear nerve, to the hearing part of the brain. It is not clear why these are sent but the brain interprets these signals as noise. The noise may also originate somewhere else in the hearing nerve pathways in the brain. The same is true of musical hallucinations. ■ What do people with tinnitus hear? Commonly, older people with tinnitus will hear ringing, chirping, buzzing, roaring, clicking or whooshing sounds. ■ Musical hallucinations Sometimes older people with hearing loss hear recognisable musical sounds, or even complete tunes or singing. Quite often these people have a strong musical interest. They may have a constant, clear perception of music pieces, such as marches, country music, and hymns. Some people identify one musical instrument in particular. The musical tones have a vibrating quality similar to the sound produced by blowing air through a paper-covered comb. However, these hallucinations are not confined to hearing musical tones. People can also hear voices singing, although the words are usually not clear. The voices range from soprano, through tenor and baritone, to bass, but the predominant voices heard are deep in tone. Voices talking to you or about you may suggest another illness and you should let your GP know about them. ■ Are there treatments available? If somebody is concerned about their tinnitus they should visit their GP. The GP may recommend some tests to be sure that it is in fact tinnitus and not something else that may require additional treatment. People may also seek some counselling or the use of anti-depressants if the tinnitus 6 is causing distress. A GP should be able to discuss the possible solutions mentioned below. As mentioned already, musical hallucinations in older people are most likely the result of hearing loss but can on occasion be caused by other more serious physical problems. To err on the side of caution, a person experiencing these should always consult their GP and should be especially mindful to do so if they experience changes in their vision, dizziness, severe headaches, problems with their speech or difficulties with movements. They should also consult their GP if hearing people who are not there talk to or about them. ■ Hearing aids Straining to hear things makes tinnitus worse and so ensuring the person has the most effective hearing aids possible can lead to improvements. Improving the person’s hearing will mean they can hear sounds they would not otherwise which will help override the sounds of the tinnitus. ■ Sound therapy Tinnitus is most noticeable in quiet environments. Some people find that having the radio or television on helps mask the sound of tinnitus, while others prefer natural sounds such as recordings of the sound of the sea or a babbling stream. There are also sound generators that can be placed at the person’s bedside that distract them from the tinnitus, allowing them to fall asleep. ■ Self-help Stress can make a person’s tinnitus worse so regular exercise however gentle, such as yoga may help relaxation. Sharing your experiences with other people who have tinnitus may help some people. Action on Hearing Loss (0808 808 0123) and the British Tinnitus Association (0800 018 0527) can help people find their local group. 7 About Sense Sense is a national charity that supports and campaigns for children and adults who are deafblind. We provide tailored support, advice and information as well as specialist services to all deafblind people, their families, carers and the professionals who work with them. We also support people who have a single-sensory impairment with additional needs. We believe that every deafblind person has the right to choose the support and lifestyle that is right for them; one that takes into account their long-term hopes and aspirations. Our specialist services enable deafblind people to live as independently as possible, offering a range of housing, educational and leisure opportunities. Feedback We welcome your feedback about this information – let us know at [email protected] Full references also available on request. Sense, 101 Pentonville Road, London, N1 9LG Tel: 0300 3309 250 Textphone: 0300 3309 252 Email: [email protected] Patron: Her Royal Highness the Princess Royal Created: February 2015 Review due: February 2017 Registered Charity Number: 289868 Company Limited by Guarantee. Registered in England and Wales Company Number: 1825301