SEEING ME Guidance on sight and hearing difficulties for staff who care for older people Fill in the Gaps CONTENTS 1. Living with a combined sight and hearing loss What Is Deafblindness? How it affects older people How many older people are affected? 2. Working with older people with a Dual sensory loss Indicators of hearing and vision loss Problems caused by dual sensory loss Communicating effectively face to face Other ways to communicate 3. Mobility and the environment The environment Orientation Mobility Guiding 4. Best practice Care homes for older people Domiciliary care Specialist services Useful organisations Questions for managers Questions for frontline staff 5. Resources References The block alphabet The deafblind manual alphabet This booklet offers information and advice about hearing and sight loss for those working with older people. It explains what dual sensory loss is and how it affects older people. It explains how older people can be supported and helped in residential care and in their own homes. Increasing numbers of older people are developing hearing and vision problems. Some older people have significant hearing and vision difficulties – known as deafblindness. Often this hearing and vision loss comes on very gradually. Older people themselves, and others around them, may not recognise or understand what is happening. If you work with older people then you probably work with people with a hearing and sight loss, but may not realise it. Combined hearing and sight loss can cause problems with communicating, getting around and accessing information. This can cause difficulties with many everyday activities and can make people feel excluded from society. But it doesn’t have to be like this. If the right services and opportunities are available, older people with hearing and sight loss can live independently and make choices about how they wish to live. 1. Living with a combined sight and hearing loss Living with hearing and sight loss is challenging, especially for older people. Understanding the problems people face can help you know how best to support them. What is deafblindness? A combination of a visual and a hearing impairment will multiply the difficulties an individual faces. For example: If you have difficulty hearing and can’t hear what someone is saying, you watch their lips and facial expressions for extra clues. But if you also become blind or partially sighted, how will you understand what is being said? If you don’t see well, you depend on your hearing when travelling to know what is happening around you. But if you become deaf or hard of hearing and can’t hear or see the traffic, how will you know when it’s safe to cross the road? If you can no longer easily see or hear the television, listen to the radio, read your letters, use the phone or engage in conversation you become isolated from people, events and society. This sensory deprivation can lead to extreme levels of boredom, stress, depression and withdrawal. Dual sensory loss is not just a deaf person who cannot see or a blind person who cannot hear. The two impairments impact on each other and multiply the total effect. One person describes it like this: “If you think of deafness as the colour yellow and blindness as the colour blue, when you mix the two together you don’t get yellow – blue but a completely different colour – green.” How it affects older people Dual sensory loss affects different people in different ways. When communication is limited, people become socially and emotionally isolated. When people can’t get around by themselves it affects their confidence, independence and daily living skills. Without access to information, people can’t make informed decisions and this leads to further loss of independence. These are common experiences for older deafblind people with hearing and sight loss. For professionals or family trying to support an individual, dual sensory loss can create challenges. If communication is difficult how do you find out what a person wants, explain their options or let them know what is happening? The boredom and frustration of their dual sensory loss can make people withdrawn or irritable. Providing the right support, and finding ways to communicate will make the experience better for everyone concerned. Don’t Miss an opportunity! If we take the view that loss of sight and hearing are a normal, inevitable part of ageing, we will fail to provide excellent services for a significant number of people. How many older people are affected? Sense commissioned independent, expert research on the numbers of deafblind people in 2010. The Centre for Disability Research report found that the deafblind population has been significantly underestimated. 62% of the deafblind population is aged over 70 and the numbers will increase dramatically over the next 20 years as a result of the ageing population. Now 356,000 deafblind people in the UK Of which, 220,000 people over the age of 70 have significant combined visual impairment and hearing loss (Sense/CeDR, 2010) Older people with vision and hearing loss from minority communities are poorly represented in statistics but it is likely that the incidence is similar to that of white British communities. These figures show how common dual sensory loss is among older people. You are probably already in contact with some older people with dual sensory loss. Read on to find out how you can make your services accessible to them and promote independence and choice. Mary Mary moved into a residential home when she lost all her remaining sight after a brain operation. She’d been almost deaf since the age of but with typical resourcefulness had led a full and rewarding life. She’d married, had two children, enjoyed working at a local shop and always enjoyed a lively social life. Now the unthinkable had happened and she had been left completely deafblind. At first, her family and the staff in the home where she lived, struggled to find a way to reach her. “We started to realise that Mum was changing” said her son Jim. “She was becoming very disorientated and was increasingly withdrawing into her own mind.” Fortunately Sense had known Mary for some time and were able to offer guidance and support. They provided a communicator guide, Nikki, for three hours each week funded by the local authority. She worked with Mary on a one-to-one basis helping her to develop a new form of communication by using cut-out wooden letters to spell words. Equally importantly, Nikki was able to train and support the other staff working with Mary in how to communicate with and support her. This was enormously beneficial. “Mum became a lot sharper in herself and was much happier” said Jim. “She didn’t talk to the voices in her head nearly as much and she really appreciated being able to talk to the other staff in the home.” 2. Working with older people with dual sensory loss In this section we will look at some of the simple, practical steps you can take to help you identify older people with hearing and sight loss, communicate effectively and provide effective support. Indicators of hearing and vision loss The following checklists will help you recognise some of the frequent indicators of hearing and vision loss. These are not complete lists; some people may exhibit none of these signs and you may observe others not listed. A person with hearing difficulties may: Complain that others mumble or speak too quickly ask others to repeat what they’ve said ask others to speak louder Repeat words to verify what’s been said Find it difficult to keep up conversations in noisy environments or in a group Have difficulty understanding unfamiliar people or accents appear confused because they try to respond but haven’t understood what was said Get tired in conversations because of the need to concentrate Withdraw from situations where conversation is expected Need TV or radio volume louder than is comfortable for others Find it hard to hear on the telephone or doorbell use a hearing aid or loop system. A person with visual difficulties may: Find it hard to identify objects or familiar faces Need more light for reading and other activities Find it hard to cope with glare, e.g. bright sunlight Sit unusually close to the TV Have unusual reading habits, e.g. holding a book close to the face Give up reading, watching television or other activities Be unable to locate small objects Spill food or knock over cups Stop eating because they can’t see their food Wear mismatched colours or have stained clothing Have difficulty moving around – walking slowly or with less confidence Bump into things Have difficulties caused by changes in light levels Have difficulties with unfamiliar routes or places. Think about It. Do you recognise any of these signs in people you work with? Problems caused by Dual sensory loss a) Communication Deteriorating hearing and vision lead to problems in communication. Equipment such as hearing aids may help. When someone can no longer hear speech even with equipment, it has to be replaced by a visual method of communication. When vision also deteriorates then communication has to become tactile, or ‘hands on’. b) Mobility Moving around safely and confidently with limited hearing and vision is very difficult and is made even more so if there are additional mobility problems. Coping with constantly moving unpredictable ‘objects’, such as people, is a major undertaking. c) Frustration When you can’t communicate with people around you, can’t get from place to place and never know what’s going on around you, daily life is very frustrating and stressful. To make matters worse many people lack an effective means of communicating this frustration. This can lead to anger, depression, withdrawal or other behaviour which is out of character. d) Boredom If you can’t see the television, can’t hear the radio, can’t see to read a book or newspaper and can’t hold a conversation, how do you fill each day? e) Isolation and loneliness From family and friends. From social networks. From information. From opportunities or experiences – for example an impromptu walk in the park or a trip to the pub. Just imagine a trip to the dining room: You don’t hear someone coming along behind you with hot plates, you don’t hear them say “excuse me”, you don’t see them pass you on the left and you don’t see the lady who is directly in front of you trying to get by. You know it’s dinner time because you can smell the food, but there seems to be something in the doorway of the dining room, and as the hallway is very dark you can’t work out what it is. Just as you are getting your bearings you’re knocked sideways from the left and collide with a body in front of you. Lots of hands reach out and take hold of you and propel you into a seat at the table. Distressed and confused you’re suddenly not hungry anymore. It doesn’t have to be like this. You can help to make sure people with dual sensory loss enjoy the same opportunities as everyone else. Communicating effectively – face to face Older people with dual sensory loss often have problems with communication. If we use common sense, clear speech and courtesy we can help an older person to understand what is being said. Simple solutions can improve the environment dramatically. Before you start: Make sure you have the person’s attention Always tell a visually impaired person that you are there Ask the person what will make communication effective and do that Make sure any equipment, including hearing aids, is switched on and working. Where to talk: Between 3 – 6 feet apart at the same level Good light is important. Face the light so that your full face can be seen Avoid background noise. Turn it off or move somewhere quieter. Clear speech: Speak clearly Speak a little more slowly than usual, but keep the natural rhythm of speech Speak a little louder, but don’t shout as this will distort your voice and lip patterns Try to make your lip patterns clear, but don’t over – exaggerate Keep your face visible. Don’t smoke, eat, chew gum or cover your mouth with your hand Focus on the person you are talking to. If you are using an interpreter, always talk directly to the deaf person, not the interpreter. Help the other person to understand: Make the subject clear from the start and if you change the subject, make sure the person knows Use gestures and facial expression to support what you are saying If necessary, repeat phrases. If this doesn’t work, try re-phrasing the whole sentence. Some words are easier to lip-read than others Don’t hurry, take your time be ready to write things down, using an A4 note pad with a black marker pen. Be aware that the effort of concentration on communicating can be hard work and cannot be maintained for long periods of time Be aware that if a person is smiling and nodding it doesn’t necessarily mean they have understood you. Other ways to communicate If a person can no longer understand speech there are other ways to communicate. Some of these take time to learn. Learning a new communication can be challenging. Don’t expect it to happen overnight and seek specialist help if needed. Writing things down Even if someone has a vision loss they may still be able to read large clear letters in thick pen, maybe even with the help of a magnifier. Experiment with different sizes of lettering and different colours of paper and pen. Block For some people, drawing block letters on the palm of the hand is the easiest way to communicate. The block alphabet is shown. This is fairly easy to learn provided the person has sufficient sensitivity in their palm to distinguish the letters. Deafblind manual This is another way to spell out letters onto the hand. It is easy for you to learn but much harder to learn to receive. Barbara Barbara has been living in a residential home for two years. When she first moved in she got on well with staff and other residents and enjoyed taking part in activities. Although she was quite deaf, she could communicate well provided the person was facing her in a well lit room. In the last few months she has become more withdrawn. New staff complain that she is difficult and bad tempered. Staff ask for advice from a specialist in sensory loss who says that Barbara’s sight has deteriorated so that she is finding lip reading difficult. This is making it frustrating for her. They find that she can still see well enough to read large letters with the help of a magnifier. Staff begin to use an A4 pad and marker pen to communicate with her. She becomes less frustrated, and talks to staff and residents again. Written information It is important that information and correspondence is provided in an accessible format. For example, letters, care plans, information about activities, menus, etc. Should be available in large print, braille, tape or disk as appropriate for the individual. Many visually impaired people have enough vision to read printed information if it is large and bold. No single size is suitable for everyone, but most people prefer their large print in the range of 6 to point. Arial is an example of a clear font. You can word process simple large print documents yourself. If a person requires information in braille, audio tape or disk formats, you can use any number of transcription services. If in doubt contact your local sensory team or other specialist agencies such as Sense, Deafblind UK or RNIB. 3. Mobility and the environment One of the challenges for older people with sensory loss is finding a way to go where they choose, and move around safely. Simple changes to the environment, mobility training and guiding can all make a big difference. The environment Moving from place to place when you have little or no sight and hearing is a very frightening and stressful experience. It is not helped by well-meaning people grabbing you and dragging you across a room you don’t recognise and which offers you no useful clues as to where you are. The ability of a person with hearing and sight loss to move around with or without support should be considered in the context of the whole environment. There are aspects of the environment that can be adapted to aid the individual’s feeling of confidence and improve the chances of independent mobility. Lighting Ensure good lighting. Strip lighting or low energy halogen bulbs cast no shadows and illuminate a whole area – no dark corners to fumble about in. Stairways in particular should be well lit. An 11 watt fluorescent task lamp provides a source of good personal lighting. Noise Avoid unnecessary background noise. The radio, the television; a vacuum cleaner, all create an environment where it is difficult to identify specific sounds or understand speech. Background noise will also cause problems for people using hearing aids, which amplify everything, not just the speech. If the only place to meet people is a room where the TV is on all the time this will cause problems for anyone with a hearing impairment. Having the radio on while you work will make communication harder. Contrast Door handles, door frames, light switches, placemats at meal times in contrasting colours can be useful aids to vision. The edge of steps should be highlighted either by an edging strip in good strong contrasting colour or by hazard tape. Ensure the internal decor is suitable – no fussy confusing patterns with doorways painted a blending colour. Instead have plain or very simple patterned walls with doorways and skirtings picked out in a contrasting colour. Staff should wear clothing which gives them a strong outline and contrast. No spots, stripes or flowery patterns. Plain un-patterned clothing in strong colours is best. Dangers Doors left half open can cause nasty injuries. Buckets, wastepaper bins, handbags, left where they will cause someone to fall. Things like shelves which jut out from the wall at head height. Low items like coffee tables in the middle of the room. Steps that have no hand-rails or a hand-rail that finishes before the last step. Orientation Orientation is the ability to locate ourselves within our environment. Both within the home and outside there are a variety of clues which can help a person identify where they are and therefore move around independently. Location clues There are many naturally occurring clues that can provide useful information. Inside the home one might consider a typical route from the bedroom to the bathroom – the table by the door, the door, the radiator, the corner outside the bathroom etc. The positioning of furniture can be an important orientation clue. For example, chairs and other furniture can be used to divide a large room into a more easily understood smaller area. If furniture is used as a location clue then it is important that it is not moved around regularly. Outside in the garden perhaps there are different sorts of paving, a lawn, a gate etc. It can be useful to follow a route blindfolded and write down all the clues that you used to locate your position. Sound can also be a useful location clue for a person with enough hearing. It may not be a good idea to have the radio on all of the time but if it is always located in the kitchen then that is a good guide to where that room is. Smell too – it may be a good idea to use the same pot-pourri in a bedroom and only in that bedroom. Mobility The aim should always be to enable the person to move around their environment, either inside or outside the home, as independently as possible. There are a number of techniques which will help the person to feel confident. It is important to develop a trusting relationship between the person and the carer who is helping to develop mobility skills. Learning how to trail a route is an important step. Pick a short route and encourage the person to hold one hand ahead while trailing the back of the other hand against a wall. Help them to explore the texture of the wallpaper and any other clues on the route. You might like to use a border strip of wallpaper or, for a more temporary learning period, a strip of velcro. More complicated routes can be broken down into easier stages. For example, a walk from the kitchen to the lounge: Walk the entire route pointing out all of the clues along the way. Divide the route into stages. Support the person in learning the first stage of the route. When they can achieve that part independently, move onto the subsequent stages. Guiding Get into the habit of using the correct technique of guiding. Offer your arm for the person to hold and allow them to follow you. Don’t grab, push or pull a person – this can cause an accident and be very frightening for them. Judge the speed the person feels safe walking. If someone has not been guided before they will probably want to go slowly. They may also have other physical problems such as arthritis which make walking difficult or painful. Sudden changes of direction are best avoided. Let them hold the handrail on stairs and walk in front of them, waiting at the top or bottom to guide them. When you are showing a person to a seat or chair, put their hand on the arm or back of the chair and let them sit down. Don’t try to push them into the seat. Ethel Janet is a care worker providing support to people in their own homes. She visits Ethel once a week to help with cleaning and shopping. Normally Ethel is very friendly but recently Janet notices she seems very confused and even a simple conversation is difficult. She also notices that Ethel has begun to lose things, especially if she has moved something. She is concerned that the confusion is because Ethel doesn’t see and hear well, not because of dementia. Janet tells her manger that she thinks some specialist help is needed. When she is working, Janet also makes sure she leaves things exactly where she found them, and that she uses good clear speech when talking to Ethel. 4. Best practice Many of the older people who live in care homes or receive care in their own homes have hearing and sight loss. Providing good quality care means recognising their needs. Care homes for older people If you work in a care home for older people then you will almost certainly have service users who have a dual sensory loss. In this case it is not possible to meet the national minimum standards issued by the Department of health and the National assembly for Wales without taking account of their needs. Service user plans The plan should be drawn up with the involvement of the service user. This is not possible unless you can establish meaningful communication. It must also be recorded in a style accessible to the service user (see part 2). Social contact and activities Keeping active is vital to keeping healthy as we get older. Enabling people to maintain leisure and social activities and cultural interests will require thought about what support the person needs to do this. One of the greatest challenges for older people with hearing and sight loss is to fill the time when reading, television and other activities may be difficult or impossible. However, it is possible to adapt activities, for example large print knitting patterns and audio-taped books. RNIB sells a number of tactile games, such as dominoes and playing cards which can be played with sighted and hearing people too. Some museums, galleries and cathedrals offer ‘touch tours’ for people who cannot see exhibits. Don’t assume a person has to give up activities they once enjoyed. Look for ways to make them accessible, and ask for specialist help if necessary. Look for new activities that they may enjoy. There may be social clubs for people with sight loss or even people with both hearing and sight loss. Think about the social activities available to your service users. Do they all assume the ability to hear in a noisy environment? Have you provided communication support such as a loop or communicator guide where appropriate? Food, meals and mealtimes For people with sight loss, eating can be difficult. Dining rooms can be noisy, making speech difficult to understand. If a person always sits in the same place this can make it easier for them. Imagine being served white fish with mashed potato and cauliflower on a white plate if you can’t see well. Think about making the most of people’s remaining vision by serving attractive food on a contrasting plate and place mat in a well-lit environment. If a person’s hearing and sight loss is severe, make sure they know the food is there and don’t take the plate away until you are sure they have eaten enough. Specialist equipment Service users should have the specialist equipment they require to maximise their independence. For people with a dual sensory loss this will include a range of high and low tech equipment. Loop systems can help anyone who uses a hearing aid to hear speech or the TV. Magnifiers can help with reading. Tactile markers, vibrating alarm clocks, task lighting, the list is endless. a specialist assessment may be necessary to identify the best solutions. For information about specialist equipment contact your local social services sensory team. There is also information about technology on the Sense website: www.sense.org.uk/technology Domiciliary care For people with hearing and sight loss, having someone come into their home, moving things around and not explaining what they are doing is disturbing and possibly frightening. If you provide domiciliary care to older people then you are almost certainly providing care to those with a hearing and sight loss. It is very likely that this will not have been identified by those arranging for the care. Identifying dual sensory loss It is essential that all care staff working with older people know how to recognise indicators of sensory loss. This allows them to recognise the problems a person is facing and change the way they work with them. If the person’s hearing and sight loss are such that they need specialist services you may need to alert someone such as social services about this. Sense has produced a handy checklist which fits in a purse or wallet – contact Sense for copies. Good practice Ensure you can communicate with people with a hearing loss. The information in section 2 will be useful for communicating with deaf people as well as those with a hearing and sight loss. Make sure that the person knows you are there, who you are and what you have come to do. Make sure you work safely. Be careful about where you leave bags while you work. A half open door can be a hazard. Leave every door as you found it. Specialist services This is a brief overview of the services that may be available for older people with a dual sensory loss. Many are available from social services for those who are eligible. Others can be purchased from suppliers or local voluntary agencies. Specialist assessment and care planning – assessing the effects of hearing and vision difficulties and their impact on maintaining independence. Advice, information and advocacy – accessing health and social services, welfare rights, national deafblind organisations, local agencies. Equipment – assessment and provision of equipment to assist with everyday activities: e.g. easy-to-see amplified phones; large screen textphones; personal TV listeners; loop systems; tactile markers; vibrating pager systems for doorbell, telephone or smoke alarm alerting. Mobility training – including advice on making the home safer to move around in or training in travelling outdoors independently and safely. Communication – including support to develop appropriate communication skills for both the person themselves and family members or carers and information about using interpreters. Other skills training – including safety in the kitchen and home environment. One-to-one support – e.g. communicator-guide services. Communicator-guides are people trained to help with communication and mobility to enable individuals involvement in every day activities and relieve isolation. The tasks carried out will vary depending on the individual and their needs, but may include: attending appointments; escorting to the shops; reading correspondence; taking exercise; leisure activities. The Department of Health has issued guidance to local authorities called Social Care for Deafblind Children and Adults LAC(DH) (2009)6 informing them how to provide services to people with combined sight and hearing difficulties. Their responsibilities include identifying and making contact with people with these combined difficulties and ensuring that assessments are carried out by a specifically trained person or team who are equipped to assess the needs of the person they are assessing. For more information about how a local authority assessment could help somebody you are working with contact the Sense Information and Advice Service. What to do when you’ve read this… For managers 1. Think about some of these questions: Do we recognise that combined hearing and vision loss interact to create a separate and unique disability? Do we know of people who use our services who have a hearing and sight loss? Could there be more that we haven’t recognised? Do our staff know how to communicate with a person with hearing and sight problems? Should any of our staff have specialist training? Do we know when and where to refer on for specialist assessment or support? 2. Order copies of the Sense checklist for all your staff. Ask them to identify anyone who may have a dual sensory loss. 3. Think about the service you provide those people. Is there anything that needs to change? 4. Think about the training you provide for staff. Does it include information about dual sensory loss? For frontline staff 1. Look at the checklist in section 2. Think about the people you work with. Do any of them have a dual sensory loss? Should you tell anyone about this? 2. If you identify people with a dual sensory loss, do you need to change the way you work with them? Think about: Communication Mobility Orientation Safety Access to information. 3. Talk to your manager about the content of this pack. Luna Luna, 78, has a hearing impairment and only a tiny amount of residual vision in her right eye due to glaucoma linked to diabetes. She can hear speech if someone speaks slowly and clearly to her. When her sight and hearing deteriorated she lived with two of her daughters for a while but then decided to move into a residential home. She’s very pleased with her ground floor room and the staff have gone out of their way to meet her particular needs – including receiving deafblind awareness training from Kent Association for the Blind (KAB). Luna also receives the support of a communicator guide – Jackie – from KAB. Jackie enables her to get out and about, go shopping, collect her pension, have a cup of coffee in a local café. She has a strong bond with Jackie and still keeps in close contact with her former guide. Luna speaks of them with a smile on her face. Now Luna has the care and environment that suits her. She regularly attends a craft class and is taking computer lessons. As a religious person, she is supported by her local church which escorts her to and from services. All these arrangements have allowed Luna to keep much of her independence and to choose how she wishes to live her life. 5. Resources There are a range of organisations, publications and resources which can help you improve services to older people with dual sensory loss. Useful organisations: Sense’s Information & Advice Service Sense’s Information & Advice Service offers accurate, comprehensive and up-to-date impartial information and advice for deafblind people, their families, professionals working with deafblind people and anyone who has a general enquiry about Sense or any aspect of deafblindness. The service covers England, Wales and Northern Ireland. Contact the Information and Advice Service: Tel: 0845 127 0066 Textphone: 0845 127 0066 Email: info@sense.org.uk Deafblind UK National Centre for Deafblindness John and Lucille van Geest place Cygnet Road Hampton, Peterborough Cambridgeshire PE7 8FD Helpline: 0800 132 320 www.deafblind.org.uk Action on Hearing Loss 19 - 23 Featherstone Street London EC1Y 8SL Tel: 0808 808 0123 Textphone: 0808 808 9000 www.actiononhearingloss.org.uk Email: informationline@hearingloss.org.uk RNIB 105 Judd Street London WC1H 9NE Tel: 0303 123 9999 www.rnib.org.uk Email: helpline@rnib.org.uk Deafblind Awareness Training Sense and Deafblind UK provide a range of deafblind awareness and skills training. References: Butler, S J (2004) Hearing and Sight loss – A handbook for professional carers, Age Concern England Hodges, l and Douglas, G (2005) Short Study on hearing and sight loss – preliminary Report for The Thomas Pocklington Trust, University of Birmingham Third European Conference of Deafblind International’s acquired Deafblindness Network proceedings (1998) Elderly Deafblindness Robertson, J & Emerson, E Estimating the Number of People with Co-occurring Vision and Hearing Impairments in the UK CeDR Lancaster (2010) Web based resources: To make information accessible – see RNIB’s ‘See it Right’ pack – available at www.rnib.org.uk Sense website www.sense.org.uk Sense, March 2011 Website: www.sense.org.uk/fillinthegaps Reg. charity no.: 289868