DeMEntia& DEAFness

What YOU need to know

Kate AllanFrankie McLeanLiz Scott Gibson

We are grateful to the Queensberry House Trustfor funding the development of a training session and the production of this booklet.

We would also like to acknowledge theQueensberry House Trust and the ScottishExecutive for funding an earlier phase of work in which Deaf Action worked with theDementia Services Development Centre,University of Stirling to produce Dementia andDeafness: An Exploratory Study, which is important background reading to this booklet.This document has been published as a PDF onwww.dementia.stir.ac.uk and www.deafaction.org

Our thanks also go to Will Clark, CarolineEwing, Lilian Lawson, John Killick, MaryMarshall, Drena O’Malley, Kate Stoker andCatherine Thompson for their help in writingthis booklet.

Acknowledgements

About dementia 2About deafness 5

Acquired hearing loss 5Profound or cultural deafness 6Deafblindness 6Physical disability 7Learning disabilities & deafness 7Tinnitus 7Measuring hearing 8

What YOU can do to help 9Is hearing loss a problem? 9Vision is important too 10Improving communication 10Helpful ways of speaking 10Nonverbal communication 12The physical environment 12Activities and routines 13

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Contents

Working with hearing aid users 15About hearing aids generally 15Day to day use – the basics 16Batteries 16Cleaning hearing aids 16Helping people with dementia to use hearing aids 17

Supporting sign language users 18British Sign Language 18Using BSL 18Writing things down 19Fingerspelling 20Lipreading 20Human aids to communication 20Working with interpreters 21Deafblind people and people withlearning disabilities 22

Equipment which can help 24Where to find out more Inside back cover

& back cover

The word ‘dementia’ is used as a general termfor a number of related conditions. Thisincludes the more common types such asAlzheimer’s Disease and vascular dementia. Theless common types include dementia with Lewybodies and Pick’s Disease.

About one in 20 people over the age of 65 hasdementia. It can also develop in youngerpeople, but it is rarer. More people will bediagnosed in the coming years as the UKpopulation grows older. Most people withdementia live in their own home.

We do not know what causes dementia. Forsome people there may be a genetic aspect.There are now drugs which can help to slowdown the rate at which things change.However, they do not ‘cure’ the condition.

* All the quotations come from ‘Dementia & Deafness:An Exploratory Study’ – details of how to get thisreport are provided in Acknowledgements.

The main symptoms of dementia are: memory lossconfusiondifficulty with thinking and decision-makingdecline in skills needed for everyday livingchanges in ways of communicating

At first the individual’s problems are likely to befairly mild. They may get the details of recentevents mixed up and have problems findingthe right word or sign (if they are a signlanguage user). As the condition progresses,however, things become more difficult.Eventually they may stop using languagealtogether. Memory problems may progressuntil the person seems to be in a permanentstate of confusion.

Although the symptoms of dementia usuallyinvolve losses of various kinds, it is veryimportant to remember that the person whohas dementia does not get ‘lost’. They are stillthere, trying to understand things, trying tokeep in touch with other people and do things which are important to them. They still havefeelings, likes and dislikes and hopes for the future.

About dementia

2

I’m forgetting things all the time…oh dear! *

(Deaf service user)

Every person who has dementia experiences itin their own individual way. How the conditiondevelops depends on the person’s personality,history and personal circumstances. How thosearound the person behave towards them makesa big difference too.

Communication is a central issue. Often theperson’s ways of communicating will changeover time. They may have problems finding theright words or signs and this might causefrustration. But they still need to remain incommunication with those around them. So,we need to adapt our ways of communicatingto suit the individual.

Trying to keep in touch with the person tellsthem that you know they are a unique andvaluable person, and that their feelings andneeds matter.

There are many ways to communicate. As wellas words, there is eye contact, touch, and facialexpressions etc. Sometimes simply offering afriendly smile and a reassuring touch will bemore helpful to the person than using a lot ofwords. We should never say that a person

“can’t communicate”. Rather we should ask“How is this person telling me about theirneeds?”

It is important to help the person to remaininvolved in things which they enjoy and arefamiliar. They also need to keep as muchcontrol as possible over what is happening to them. This may lessen feelings of fear andanger, which can lead to the person doingthings which other people find difficult (for example, hitting out or trying to get awayfrom situations).

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About dementia

I think his hearing is a contributoryfactor in the sense that it affectstheir confidence because if they don’thear somebody speaking to them,and they’ve got this confusion withmemory, it plays havoc with theircommunication.

(Relative of service user withacquired hearing loss)

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About dementia

Many people with dementia also havedepression, although often it is not recognisedor treated. The person may withdraw fromactivities and relationships, and generally losetheir confidence. It is easy for others then tothink these changes are caused by dementia,rather than realising that the person isdepressed as well.

In common with other older people, manypeople with dementia also have hearing loss.Some of them will have been deaf from anearly age. The difficulties which are part ofdementia are made much worse when theperson cannot hear properly. Our response tothis situation will have a huge effect on howthey feel and what they are able to do.

There are an estimated 9 million deaf and hardof hearing people in the UK; this meansapproximately 1 in 7 people.+ This number isrising as more people live well into old age.Most of them gradually lose their hearing asthey get older – only 2% of young adults aredeaf or hard of hearing. The proportion of deafpeople starts to increase significantly aroundthe age of 50; and 71% of the over 70population are deaf or have significant hearingloss.

Types of deafnessThere are two main types of deafness: acquiredhearing loss and profound or ‘cultural’ deafness.There are also people who have multiplesensory needs, such as those who are both deafand blind, and those with physical and learningdisabilities.

Acquired hearing lossDeafness which develops during a person’slifetime is usually called ‘acquired hearing loss’. There are two types of acquired hearing loss:

conductive deafness – sound has difficultyin passing through the outer or middle earsensorineural deafness – the cause ofdeafness lies in the cochlea or hearing nerve

Acquired hearing loss can come about througha variety of causes. Certain types of illness andinjuries can cause deafness, which is eithertemporary or permanent. This can happen atany age.

Exposure to loud noise is one of the mostcommon risks to otherwise normal hearing.Permanent damage to the ears can be causedby as little as one minute’s exposure to loudmusic in a night club, for example!

+ See these symbols in ‘Where to find out more’ forsource of information.

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About deafness

It’s a horrible feeling - standingtalking to somebody and they’retalking back at you and you can’thear what they’re saying... You feel so stupid.

(Service user with acquiredhearing loss)

Profound or ‘cultural’ deafness

People who are born deaf or have become deafvery early in life are often known as beingprofoundly or culturally deaf. Most deafchildren (95%) are born to two hearing parentswho will probably know nothing about Deafpeople or sign language.

Many deaf people consider themselves part ofthe Deaf community (deaf with a capital D)and are comfortable with their own Deafidentity. Such Deaf people emphasise theimportance of vision in their lives, and do notplace particular focus on not being able to hearor speak particularly well. Some do not benefitat all from hearing aids and choose not to wearthem. In the UK Deaf people use British SignLanguage (BSL) as their first language. Moreinformation about BSL and ways ofcommunicating with sign language users isprovided later in this booklet.

Some will have attended Deaf schools, and it iscommon for Deaf people to marry other Deafpeople. If they choose to do so, Deaf peoplecan enjoy a fully participative social life withinthe Deaf community. There are clubs for Deafyoung people and for older people, churcheswhere BSL is used, Deaf drama and other artsorganisations, and a wide range of sports clubswhich participate nationally and internationallyin everything from chess to football.

However, it is also true that Deaf people havemuch higher rates of mental health problemsthan the general population. This is probablyrelated to the fact that people in the hearingworld generally do not recognise the needs andabilities of Deaf people, and there is still a greatdeal of discrimination. You can find out moreabout the Deaf community by watching TVprogrammes such as ‘See Hear’ on the BBC.

DeafblindnessIt is thought that there are 24,000 deafblindpeople in the UK. A much larger number havesignificant difficulties with both vision andhearing which are not classified asdeafblindness.*

* See this symbol in ‘Where to find out more’ forsource of information.6

About deafness

Hearing people should wake upabout deaf people.

(Deaf service user)

Deafblind people may have particular difficultiestaking in information. Some may be likely tofocus on a particular piece of information andget it out of context. This may make anindividual appear to be confused generally.

Because of these factors they are at high risk of being ‘informally diagnosed’ as havingdementia. If the person has some degree ofvision and hearing, don’t assume that this will lessen confusion. It may even make matters worse.

Physical disabilityIn common with many older people, Deafpeople and those with an acquired hearing lossare likely to develop various sorts of physicaldisabilities as they grow older. Arthritis, inparticular, may interfere with the ability of asign language user to communicate, andgeneral frailty or mobility problems will makecommunicating whilst moving around moredifficult.

Learning disabilities & deafnessPeople with learning disabilities are more likelyto be deaf or hard of hearing than those in the

general population. Many significant peoplewith a learning disability also have a hearingloss of. People with Down’s Syndrome are alsomuch more likely to develop dementia.

TinnitusTinnitus is the name given to a condition wherea person hears sound which is not coming fromoutside the ears. This sound may resembleringing, buzzing or whistling. In some cases itcan sound like music or voices. The sounds maybe present all the time or they may stop andstart.

We do not know what causes tinnitus. It isestimated to occur in about 10% of thepopulation (people of all ages), and about 5%are thought to have severe or persistent problems. Tinnitus cannot be diagnosed unless

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About deafness

Well, I forget things... But I don’twant to be in home with hearingpeople... Being with hearing peopleis lonely, lonely, lonely.

(Deaf service user)

See this symbol in ‘Where to find out more’ forsource of information.

the person experiencing it reports theirproblem. This means that people who havedementia may also be experiencing tinnituswithout others knowing.

Some psychological treatments for tinnitus areavailable. These generally involve helping theindividual to cope with their symptoms bydiverting their attention away from thedistressing sounds. Many people with dementiawould find such methods difficult to learn.It has been suggested that avoiding stress,caffeine and loud noise are also helpful.

Measuring hearingA hearing test, carried out in an NHS clinic orby a private company, identifies the quietestsounds a person can hear across a range ofpitches of sounds (their thresholds). The higherthese are, the greater the hearing loss.

0-19 Little or no difficulty following speech

20-40 Mild deafness; some difficultyfollowing speech, especially in noisyenvironments

41-70 Moderate deafness; difficulty infollowing speech without a hearingaid.

71-95 Severe deafness; people usually relyon lipreading even with a hearingaid. BSL might be a preferredlanguage.

95 > Profound deafness; for those deaffrom birth, BSL may be a preferredlanguage.

Deaf and hard of hearing people choose tocommunicate in different ways depending ontheir level of deafness and/or preferences. Forexample, people with mild hearing loss mayfind that lipreading or using a hearing aid ismost effective. People with more severe hearingloss might prefer to use British Sign Language(BSL), a speech-to-text transcription system, orrely on intensive lipreading. Deafblind peoplemay use the Deafblind manual alphabet, or‘hands-on’ signing.

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About deafness

The following are some important things toremember – whether you are working with aperson with dementia who has always beendeaf or one who has become hard of hearing inlater life:

We must try to keep communicationchannels open.It is not acceptable to write the person off and assume that they are unable tounderstand you and have nothingimportant to tell you.Everyone is different - we need to adopt anindividual approach.Sometimes we will not be sure if we havebeen successful or not – but we still mustn’tgive up.Keeping an open mind is essential.

Is hearing loss is a problem?When you meet someone with dementia whoseems unresponsive, don’t just assume that thisis due to their poor memory. Ask yourself whatrole hearing loss might be playing in thesituation. If the person is over 70 it is likely thatthey will have some degree of hearing loss.Many will have a significant hearing loss.

There are some simple things you can do to try tofind out about how good a person’s hearing is:

Start by facing the person and talkingnormally. Avoid asking yes/no questions which meanthat the person is more able to guess anappropriate answer. Open questions like“What did you have for lunch?” are morelikely to reveal a problem with hearing.

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What YOU can do to help

Some people don’t bother, you see . . . .They don’t understand how I’mfeeling.

(Service user with acquiredhearing loss)

It takes time. If you’re alerted to itvery quickly that’s fine, butotherwise it could be weeks downthe line and you realise someone’shaving difficulties withcommunication.

(Care practitioner)

Then try casually covering your mouth asyou speak. This will interfere withlipreading.

If you suspect that there is a problem which hasnot been picked up previously, the personshould see their GP. Sometimes a simpleintervention such as ear syringing may help. Forothers a referral to an audiology service or otherspecialist will be necessary.

Vision is important too!Deaf people rely more on visual clues in day today life, so making sure that the person iswearing clean, up-to-date spectacles is essential

Improving communication

Helpful ways of speaking Choose a quiet place or minimisebackground noiseGet the person’s attention before you startspeakingMake sure the person can see your faceclearly and that it is well-litGet onto the same level so they are nothaving to look up or downDo not shout or raise your voice! This willdistort your speech making it more difficultto understand. It may also make you soundangry or impatient, and can be painful tothe deaf person.Say clearly what the conversation is about.Keep the message simple

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What YOU can do to help

And he complains about his eyesightas well. I know that he did have thestart of a cataract, but he says thathe cannot read a newspaper now.But with the communication beingpoor, how does he tell his opticianabout how he’s feeling, how he sees?

(Relative of person with acquired hearing loss)

When someone has dementia somany things come down tolanguage and communication.

(BSL/English Interpreter)

Speak a little more slowly than usual, butkeep the natural rhythms of your speech.This will help the person with lipreading.Do not over-exaggerate your words as youspeak.If the person is having difficultyunderstanding, try using different words toexpress your meaning.If the person is comfortable with reading,you can also try writing down yourmessage.

Every voice and situation is different. So therewill be times when an individual can hear moreclearly than others. But it is NOT fair to saythings like “He can hear when he wants to”!Also, when communicating with someone whois hard of hearing, never give up and say “Itdoesn’t matter” or “Never mind”. Deaf peopleoften find this upsetting.

Bear in mind that if the person has been hardof hearing for some time, they will probablyhave developed some lipreading skills (althoughthey may not be aware of it).

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What YOU can do to help

(About people speaking very loudly):

Oh, not good at all. No… you don’twant that because it can sometimesbe disconcerting that – a louder voice.

(Service user with acquiredhearing loss)

Nonverbal communication

The following points are some ideas for makingthe most of nonverbal communication:

Try to be relaxed and friendly – smile!Avoid any signals which might make youseem impatient.Make sure that the person can see your faceclearly – don’t sit or stand with your back tothe window or other source of light.Do not cover your mouth with your handor anything else while you speak.Use eye contact to hold the person’sattention.

Use gestures to back up what you mean,but avoid moving your hands around toomuch as this can be distracting.Use your fingers to give important detailslike numbers.Get close enough to the person to have aconversation, but not so close they feelcrowded.If it seems appropriate, touch can also beuseful.Use objects or pictures to help the personto understand what you are telling orasking them.

The physical environmentTake some time to think about how thephysical surroundings might be affecting thedeaf or hard of hearing person:

Reduce background noise whereverpossible. TVs, radios etc should be switchedoff when no one is paying attention tothem.Think about whether there are othersources of sound which could bedistressing, for example fans/extractors,alarms, telephones etcTry to ensure that there are soft furnishings

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What YOU can do to help

I have to work in conjunction with myeyes. You have to think of things, toassociate what you see and what youhear… Gestures… It’s important forpeople like myself who are hard ofhearing to associate fairly quicklywith what they’re saying. … I needvisual as well as hearing aids.

(Service user with acquiredhearing loss)

in rooms. They absorb sound and stop itechoing around.For rooms with hard floors, minimise noisecreated by chairs etc moving by fittingrubber ends on chair legs etc.Do not position yourself with your back to awindow or other source of light. Your facewill be in shadow and difficult for theperson to see.Bear in mind that for a deaf person being inthe dark may cause significant anxiety asthey will be cut off from any kind ofcommunication.

Activities and routines

How much do the routines and activities inyour service include people with dementia whoare deaf or hard of hearing? These questionsshould start you thinking…

When people come together for socialactivities (for example quizzes, bingo etc)how easy is it for those with poor hearingto participate?How many people come together at onceto take part in activities?

What about mealtime arrangements? How noisy is the place where people eat? Are chairs and tables moved on hard floors?Is there a radio on in the kitchen?

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What YOU can do to help

What about when there are 3 or 4people all speaking in a group?

A rabble!

What does it sound like to you?

Just everybody talking at once!

(Conversation between researcherand service user with acquired

hearing loss)

You’re out of company – you’re justleft to get along yourself. … MaybeI’m a wee bit sad about that. … toget so-and-so "Oh he can’t hearyou" – just like that.

(Service user with acquiredhearing loss)

What opportunities do deaf or hard ofhearing people have for making choices?Are the ways in which people sit around theroom or around tables helpful?

The things you can do to help will depend a loton the kind of service you work in. But bear inmind the following points:

Think about providing opportunities forfewer people to meet on any one occasion.For group activities, think about who needsto sit nearest to the focus of the activity.Keeping noise levels down as much aspossible makes things easier for everyone.

Providing visual information to back upspoken information is helpful. Think aboutusing both words and pictures.Show people things, for example meals,rather than relying solely on descriptionsand spoken questions.Make sure lighting levels are adequate tohelp people to use visual information.Give thought to where people sit and whois near who. Minimising the likelihood oftension or arguments is important.Find out directly from people what sorts ofthings they enjoy and how best you canhelp them to remain involved.

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What YOU can do to help

I have missed out on a lot. I’vewanted to go to clubs and things,and I know that I’m going to be anuisance to people because they’rehaving to repeat themselves to you.

(Service user with acquiredhearing loss)

About hearing aids generally

Hearing aids work by increasing the strength ofsounds that the person hears. Some increase allsound (analogue types), others are moreselective (digital types). They can offer a realimprovement in communication and otheractivities, but they also have somedisadvantages:

They are not suitable for all deaf people.Background noise can be amplified making it difficult to concentrate onmeaningful sound.They can be physically uncomfortable.They make unwanted sounds if not fitted correctly.They need constant maintenance.

Although hearing aids can help people a greatdeal, they do not return an individual’s hearingto normal. Don’t assume that as soon assomeone has their hearing aid in they can hearperfectly. Even if it is working well, they willneed time to adjust to the way things sound.

It takes time for a new hearing aid user tobecome accustomed to the aid. A person withdementia will take even longer and need extrasupport.

There are several different types of hearing aid.The most common is a behind-the-ear hearingaid. This is worn with a piece in the ear andpart of it at the back. This diagram shows theimportant parts of such an (analogue) aid:

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Working with hearing aid users

I can’t do without my hearing aid.I’m lost without it. … I would say itis a marvellous thing. Aye, it’s notsomething you can do without onceyou start with it.

(Service user with acquiredhearing loss)

volumecontrol

battery

battery compartment

earpiece

tubing

on/off &T-settingcontrol

Analogue hearing aids have a ‘T setting’(telecoil) which works in a different way fromusual. The user has to put their aid to the T setting when technology (an induction loop)is available, for example in a large room, publicplaces etc. Induction loops create a magneticfield inside a loop which works with the hearing aid.

An inside-the-ear hearing aid has all thetechnology in the one part (as shown inpicture).

It is also now possible to get much smaller aidswhich fit inside the canal of the ear.

NHS Audiology Departments (which assesshearing and prescribe hearing aids) often havelong waiting lists as demand for their services isvery high. As well as NHS clinics, there is arange of private providers of hearing aids.

Day to day use – the basicsA hearing aid has to be switched on for it towork! Forgetting this is a common mistake.Switching it off at night is important forconserving batteries.

The volume of analogue aids needs to be set bythe user or their carer. If it is too high, it willwhistle. If it is too low it will not be effective.Note that whistling may also be caused by abadly fitting earmould or the mould not havingbeen inserted correctly.

BatteriesHearing aids rely on batteries which have to bechecked and changed. Batteries should bereplaced before they run out. Depending onthe type of hearing aid, batteries may last onlya few days to about 3 weeks. New batteries areavailable free from your local AudiologyDepartment

Cleaning hearing aidsHearing aids must be cleaned regularly or theywill become blocked with ear wax and otherdirt. Behind-the-ear aids should be cleaned bydetaching the mould and tube from the partwhich contains the technology. It is vital notto get this part wet! The mould and tubeshould be washed in warm, soapy water (donot use detergent). Wax can be removed witha soft brush. The tube needs to be completelydry before the aid is used again – waterdroplets will distort the sound.16

Working with hearing aid users

If detaching and washing the mould and tubeis too difficult, it can be cleaned (daily) with anantiseptic wipe and by using a small hook orbrush to remove wax.

Inside-the-ear hearing aids can only be cleanedusing antiseptic wipes. They must neverget wet.

The tubes on behind-the-ear hearing aids mustbe changed approximately every 6 months orthey will become rigid and fail to work properly.Spare tubes are available from AudiologyDepartments.

Helping people with dementia to usehearing aidsSome people with dementia will have started touse their hearing aid before the onset of theirmemory problems. Such individuals are likely tobe more confident with their aid, but may stillrequire support and encouragement to use it.

Helping someone with dementia who is new toa hearing aid to start using it is more complex.The following ideas may help:

Don’t expect the person to get used to itquickly – it is likely to take a lot of time.Encourage the person to try using it for veryshort periods initially, and then graduallyextend them.Encourage the person to begin using theiraid in fairly quiet, calm circumstances.Bear in mind that things will sound verydifferent to the person at first – this maycause distress or disorientation – reassurancewill be necessary.For some people providing simple writtenor pictorial information about the aid forthe person to refer to may be helpful.

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Working with hearing aid users

…she sleeps much more when thehearing aids are either not in or noton. But it’s amazing what adifference it can make once they’reswitched on and she goes out … this man spoke to her and her, from going like that (indicates head down), her face just lit up and smiled.

(Relative of service user withacquired hearing loss)

Supporting sign language users

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British Sign Language (BSL)

It is estimated that 50,000-70,000 people inthe UK are BSL users. It is primarily used bythose who are deaf from an early age, but losetheir hearing later in life who use it as theirlanguage of choice.

BSL is a language in its own right which hasevolved over hundreds of years. It is a visual-spatial language, with its own grammar,structure and principles. Its word order is quitedifferent from that of spoken English. It callsupon many features in order to expressmeaning, including hand shapes andmovement; facial expressions; body languageand the use of space. Some people use Sign

Supported English (SSE). This is not a languagein its own right, but is a form of Englishaccompanied by signs. BSL has recently beenofficially recognised as one of the indigenousminority languages of the UK.

Using BSL

Although learning to use BSL fluently requiresattending classes, it is possible to learn a fewsigns which would allow you to communicateabout basic things. (See back cover for sourcesof information. )

However, if you are not a fluent BSL user andneed to communicate detailed information,then it is better to use a BSL/English interpreter.Information about this is provided later.

I go to a day centre. I draw…I’m always drawing. It’s ok … but hearing. No signing. I sometimesdon’t know what’s going on. I say‘Hello’ sometimes but… I want aday centre where people can signand I know what is going on.

(Deaf service user)

Even having a knowledge of Deafculture, and the role and limitationsof an interpreter would be better.They wouldn’t necessarily need toknow the language itself.

(BSL / English Interpreter)

When sign language users develop dementia,some changes in their use of BSL seem tooccur:

Some revert to using signs learned at anearly stage in their life.Some may find it difficult to recall the signthey wish to use.Use of signing space (clearly defined in BSLgrammar) seems to shrink.The range of handshapes used tends toreduce (the fine movements required toproduce some handshapes appearrestricted).The production of signs seems less exact.The signs used to show whether thingshappened in the past, are happening now,or will happen in the future are less clear,with the potential to cause even moreconfusion.

When using BSL with a Deaf person withdementia, try to:

Use a more simplified sentence structure.Repeat what you have understood in BSL toclarify the issue.Make sure the Deaf person watching you

has time to track the movement of yoursigns with their eyes.Be more specific when locating things inspace; it is not always helpful to point.

Writing things downDeaf sign language users tend to have lessdeveloped skills in reading and writing English.Remember that for Deaf sign language usersEnglish (or any other spoken language) will bea second language, and they may not beconfident with spelling. Writing things downcan be helpful to some people, but do notassume that it will suit everyone. Not everyDeaf sign language user will be familiar withwritten language.

Also, for people with dementia the ability tounderstand writing may deteriorate. Havingrelevant objects or pictures to hand may helpconsiderably.

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Supporting sign language users

Fingerspelling

Fingerspelling is used as a part of BSL, usuallyfor the names of people or places, or anunfamiliar item. It is a system ofcommunication where each letter of a word isspelt out using the fingers and hands. The two-handed version is used throughout the UK, andcan be slightly adapted to be used by deafblindpeople. Deafblind people may also use anothersystem known as ‘block’ which involves tracingout letters on the palm of the deafblindperson’s hand.

Remember that fingerspelling is a form ofEnglish, which not all BSL users are comfortable

with. Also, if someone has dementia, they mayfind fingerspelling even more difficult. You mayneed to go quite slowly.

LipreadingMany Deaf sign language users (and peoplewith acquired hearing loss) have developed theability to lipread people who use spokenEnglish. However, this ability may diminish if aDeaf person develops dementia, and they arelikely to find lipreading quite demanding.Remember spoken English is usually not theirfirst language. You need to take this intoaccount when trying to communicate. Don’ttry to do too much at once. Although it is avaluable means of communication, there is stilla lot of guesswork involved in lipreading.

Human Aids to Communication (HACs)It may be a good idea to think about bringingin someone who is specially trained to facilitatecommunication between hearing and Deafpeople.

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Supporting sign language users

I worked with someone in hospitaland one nurse could fingerspell a bit, she’s been on an awarenesstraining course, and when she wasaround he [the service user] wasquite bright but he faded when shewasn’t on duty.

(BSL/English Interpreter)

Human Aids to Communication (HACs) mayinclude:

BSL/English interpreters who will interpretfrom one language to the other. This couldbe from spoken/written English to BSL, orvice versa.Lipspeakers who clearly repeat whatsomeone has said without using their voice,so that the Deaf or hard of hearing personcan lipread them.Speech-to-text reporters type every wordthat is said using a special keyboard. Thewords appear on a computer screen.Notetakers write or type a summary ofwhat has been said onto paper or into acomputer.Deafblind communicators help hearingand deafblind people communicate witheach other.

Working with interpretersBSL interpreters are the most important resourcein communicating with Deaf sign languageusers. They can be booked by contacting DeafAction or other organisations (such as SASLI -see back cover for contact information.)

When using an interpreter, try to provideinformation about the discussion which is goingto take place beforehand. This will allow theinterpreter to prepare properly.

Thought needs to be given to the seatingarrangements. Interpreters should sit opposite theDeaf person in order to give clear visual access.When the conversation is going on, speakdirectly to the Deaf person (don’t say “Tellher…” etc) , and look at them while you aretalking to them and they are signing back.

Only one person should speak at any one time.There will be a slight delay whilst theinterpreter translates your words into signlanguage and for the Deaf person to respond.

If the person’s signing seems very confused, itmight help for another Deaf person to act as anintermediary between the interpreter and theperson with dementia.

Interpreters need breaks. Allow 10 minutes forevery 40 minutes of interpreting work. Remember that there are other sorts of ‘humanaids to communication’ (detailed above). Findout which is the most useful for a particularindividual. 21

Supporting sign language users

Communicating with deafblind peopleand people with learning disabilitiesMuch of the advice detailed earlier in thisbooklet also applies to communicating withsomeone who is deafblind. Again, as statedearlier, it is vital to support a person withdeteriorating vision as much as possible byhaving regular eye examinations, and havingthem wear up-to-date spectacles which areclean.

A simple way of communicating with somedeafblind people (usually those who have beendeafblind for a long time) is the ‘blockalphabet’. This involves tracing the shape ofletters (in capitals) on the palm of the person’shand. Other deafblind people use a ‘manualalphabet’ which is related to the fingerspellingalphabet used by Deaf people. This is quick tolearn. Sign language users who may begradually losing their sight (this is known as‘Usher Syndrome’) may still understand signlanguage if it is adapted to suit their restrictedvision and those who lose their sight later in lifemay use a form of ‘hands on’ sign language.However, for a deafblind person who hasdementia, bear in mind that there are likely to

be changes in the ability to use such skills.Remember to allow the person extra time.

For further information about deafblindness, see‘Where to find out more’ at the end of thisbooklet.

22

Supporting sign language users

It was so sad when he went on avisit to the new place (a signingenvironment), they signed to askhim if he wanted a drink and hereplied he wanted a coffee. Theworker from the nursing home waswith him and said ‘but he alwayshas tea’ and he did. Since he hasmoved and can sign to the staffabout what he wants he nearlyalways has coffee, it’s rarely he hastea now. All those years when theyjust brought him tea!

(Relative of Deaf service user)

Some people with a learning disability who arealso deaf may have learned to use acommunication system such as Makaton orSignalong. Being able to communicate well willrequire that you learn the signs which are mostimportant in day to day life.

Remember that pain, discomfort or tirednesswill interfere with an individual’s ability toconcentrate on conversations. Try to find thebest time of day, ensure that the person is notin unnecessary pain or discomfort, and keepinteractions short so that they do not becomeexhausted.

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Supporting sign language users

Equipment which can help

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In addition to hearing aids, Deaf and hard ofhearing people can use a range of other typesof equipment which can help them doeveryday things.

People who have longstanding deafness oftenuse specialised telephones which allow them tocommunicate with others by typing messages.These are called ‘textphones’.

A service exists which allows a hearing personto communicate with a Deaf person by talkingto a ‘go-between’ who then types the message.

Texting on mobile phones has become apopular way for Deaf people to communicatewith each other and hearing people.

There are a variety of devices available whichtell a person who is Deaf or hard of hearingthat, for example, there is someone at the door

or an alarm clock has gone off. These devicesmay use flashing lights or vibrating pads.Equipment exists to help hard of hearingpeople to hear the television without it havingto be turned up very loudly. Some devicesconnect with a person’s hearing aid (throughthe T setting on a loop system). There is analternative for people who do not use hearingaids. This involves the person wearing a set ofheadphones which pick up a transmitter fromthe television.

Deaf people who develop dementia may needhelp in continuing to use equipment whichthey may have relied on for a long time.

Do not assume that a person with dementiawho has become hard of hearing willautomatically be unable to use equipment ofthis kind. They may need extra support andencouragement, but it could make a hugedifference to their quality of life and that ofothers.

If you would like to find out more about whatsorts of equipment is available and how toaccess it, look up “Where to find out more” atthe back of this booklet.

We have flashing lights anddoorbells to help us… we’re just likeeverybody else.

(Deaf service user)

Books Mansfield J (2004) Effective Communication with People who have hearing difficultiesLondon: Speechmark *

Miles D (1988) British Sign Language: A Beginner’s Guide.London: BBC Books.

Smith C (1992) Sign in Sight: A Step into the Deaf world.London: Souvenir Press.

Lysons K (1996) Understanding Hearing Loss:London: Jessica Kingsley Publishers.

OrganisationsDeaf Action can provide advice and informationabout deafness and specialist equipment. Theyalso run BSL and Deaf Awareness courses andprovide training for organisations.

Deaf Action (Head Office)+49 Albany StreetEdinburgh EH1 3QYTel (voice): 0131 556 3128Tel (text): 0131 557 0419Fax: 0131 557 8283Sms: 07775 620 757Videophone: 82.71.100.121E-mail: admin@deafaction.orgWeb: www.deafaction.org

Where to find out more

To find out more about dementia(for practitioners), contact:

Dementia Services Development Centre University of StirlingStirling FK9 4LATel: 01786 467740Fax: 01786 466846Email: dement1@stir.ac.ukWeb: www.dementia.stir.ac.uk

(for family members)Alzheimer Scotland 22 Drumsheugh GardensEdinburgh EH3 7RNTel: 0131 243 1453Fax: 0131 243 1450Web: www.alzscot.org

The following organisations also have usefulinformation:

Council for the Advancement ofCommunication with Deaf Peoplewww.cacdp.org.uk

Deafblind Scotlandwww.deafblindscotland.org.uk.

Deafsignwww.deafsign.com

Hearing Concernwww.hearingconcern.com

Royal National Institute for Deaf Peoplewww.rnid.org.uk

Scottish Association of Sign Language Interpreterswww.sasli.org.uk

Scottish Council on Deafnesswww.scod.org.uk

Sign Community: British Deaf Associationwww.britishdeafassociation.org.uk