Isolation and lonelinessin people with sight lossin care homes (theINSIgHT project)

Social Policy Research UnitUniversity of York

RESEARCH FINDINgS

Most residents with sight lossappeared to be broadly satisfied withtheir wellbeing. However, measuringloneliness was difficult, even usingestablished scales.

Residents often experienced: a lackof social connectedness; a sense ofdetachment from other residents inthe care home; and a tendency to‘keep themselves to themselves’.

Loneliness was not equivalent to themere absence of social contact: someresidents felt lonely, others werequite satisfied with relative solitude,while others preferred more contactbut did not consider it a ‘problem’.

There were four common features ofloneliness: Intellectual – feeling that care homelife lacked stimulation;Physical – feeling that access tosocial activity was impeded;Emotional – feeling absence of aclose personal connection to others; Institutional – feeling cut-off from theoutside world.

Sometimes, efforts to include peoplein social activities went too far, withstaff effectively taking over the task.If an activity cannot be adapted forsomeone with sight loss, the studysuggests it is better to find an alter-native than to superficially includethose to whom it is not suited.

Admission to residential care isconnected with both isolation andloneliness in older people and there isevidence suggesting that rates of‘severe loneliness’ reported by peopleliving in care homes (22–42%) aremore than twice that of those in thewider community (10%). It is alsoknown that sensory impairment has animpact on maintaining interaction withfellow care home residents.

However, while care home residentsare more likely to experience sight lossthan someone cared for at home,loneliness and isolation of older peoplewith sight loss who live in residentialcare remains an under-researched area.

The aim of this study was to increaseknowledge and understanding aboutrelationships between sight loss andsocial isolation/loneliness in carehomes.

SIgHT LOSS IN CARE HOMESAND EFFORTS TO ADDRESSSOCIAL ISOLATION

Of 134 invitations to participate inthe survey, just under two thirdsof care home managers (n=85)returned a completedquestionnaire to the researchteam. A majority of care homesprovided residential care, weremanaged by a private provider,were of medium size, and with themajority of residents self-fundingtheir care.

The research team defined sightloss as a vision impairment thatcould not be corrected usingeyewear. Under this definition,most care homes had betweenone and three residents with sightloss. Most reported that theyassessed new residents’ visionusing a specialist service, andreferred current residents every12 months for a visionassessment.

The most frequent resource toassist residents with sight loss inaccessing reading materials was amagnifying device. However, 1 in6 care home managers reportedthey did not have any specificresources to assist residents.

Most care home managers (60%)reported that they did not givespecific vision impairment trainingto staff. Care homes that didprovide specific training statedthey received this from a specialistvision assessment servicecontracted to their care home.

A majority of managers reportedthat they either did not specificallyuse, or did not distinguishbetween, strategies they used toprevent or address isolation andloneliness in the wider populationof residents and those with sightloss. Just three care homes in thesample said they utilised external

volunteer services or a local sightloss charity to assist residents withsight loss to promoterecreational/social activities.

MEASURINg LONELINESSAMONgST RESIDENTS WITHSIgHT LOSS

Forty-two residents were askedquestions about loneliness usingthe well-established De JongGierveld scale. Their median agewas 92, 83% (n=35) were female;and almost all described theirethnicity as White British. Themost common reason for sightloss, amongst those where thiswas recorded, was maculardegeneration.

The measured levels of lonelinessamongst residents with sight losswas generally low. About a quarter(24%) of participants scored justone out of six on the De JongGierveld scale.However, 10residents scored either five or six,indicating significant loneliness forthis minority of respondents.

ExPERIENCES OF ISOLATIONAND SUPPORTINg RESIDENTSWITH SIgHT LOSS

Eleven care homes participated inthe qualitative element of datacollection including one defined asa specialist home for those withsight loss. Of 42 residentssignalling their interest in thequalitative elements, 18 wereinterviewed (others either declinedat a later point, or were not able toparticipate for other reasons).Interviewees were aged between66 and 98 years; 16 were aged 86and over. Fourteen intervieweeswere female. All interviewees werewhite British; three were blind andthe rest had some residual sight.Six interviewees were resident in aspecialist care home for peoplewith sight loss.

MethodsThe objectives were to:

• to map out the basic characteristicsof care homes’ sight losspopulations and efforts to addresssocial isolation and loneliness; and

• explore perspectives of residentswith sight loss, family members andcare home staff.

This was achieved through a shortsurvey of care home managers, theadministration of a measure ofloneliness amongst residents with sightloss, and semi-structured interviewswith a subsample of residents, carehome managers and family members.

i FINDINgSBACKgROUND

Some residents with sight lossexperienced a lack of socialconnectedness, a sense of detachmentfrom other residents in the care home,and a tendency to ‘keep themselves tothemselves’. Although not everyonesaw this as a ‘problem’, there were anumber of barriers identified inaddressing isolation. These included:

• Difficulties using communal areas,such as by not being able torecognise people, a lack of topicsfor stimulating conversation (astheir life revolved around the carehome routine), and difficulties inmoving around so they could sitnext to particular people.

• Noise and background activity wasparticularly disruptive for residentswith sight loss, who depended agreat deal on their auditory senses.For example, mealtimes provedparticularly difficult because of therange of sounds during such a busytime in the care home.

• Inaccessible activities could befrustrating. Some activities weredifficult to adapt to those with sightloss, whilst others were thought ofas being boring. Staff generally didtheir upmost to include residentswith sight loss, but some activitieswere simply too challenging toadapt. In some instances, peoplewere unaware of what activitieswere available, since theprogramme was written and notread to them.

Most people maintained closerelationships with their family andfriends outside the care home andthese were regarded as mostimportant to maintaining socialconnection. However, others did nothave family and friend to visit them.Those with access to adaptedcomputers or phones used these tomaintain those contacts.

The research prompted someevaluation of what it means for peoplewith sight loss to ‘be lonely’. As found

in other research with older people ingeneral, loneliness for this groupcannot be simply equated to the mereabsence of social contact. Some weresatisfied with being relatively isolatedcompared to others, preferringindividual activities or solitude. Othersdid express preference for more socialcontact, but nevertheless did notconsider it a ‘problem’ that needed tobe rectified.

For those that did report feeling lonely,there were several elements to this:

• An intellectual isolation: some feltthat there were lots of people withwhom they could interact andconverse, yet this did not makethem feel less isolated because itlacked stimulation and purpose.Scheduled activities were similarlylacking stimulation, and familymembers suggested they should beundertaken in smaller groups tohelp residents with sight loss toengage fully.

• Physical isolation: some felt thatthey could not access the areas,activities or rooms with confidence,or could not communicate withthose they wanted to. This physicalsense of separation from theirpreferred place was a significantloss for some, and those with moreindependent mobility (typicallyyounger residents with someresidual sight) appeared better ableto make the most of communalenvironments.

• Emotional isolation: others felt alonging for re-connecting importantrelationships they felt they hadeither lost or which had dwindled,particularly with long-term friendsand family. It appeared that thosewith sight loss perceived that theywere at particular risk of losingthese connections.

• Institutional isolation: Even wherecare homes provided relevantactivities, some felt cut-off fromthe outside world. Family members

noticed that care home residentsseem to live ‘in a bubble’.Tentatively, there may be somesuggestion that this form ofisolation coincided with a sense ofidentity loss; that maintainingroutines, activities and connectionsthat existed before entering thecare home were importantcomponents of ‘who they were’.

Emotional isolation as identified in thisstudy appeared to echo other researchwith sighted residents, so this may notbe distinct to residents with sight loss.However, other forms of isolation hadparticular features directly arising fromvision difficulties.

Interviews with care home managersindicated that they were aware of themany challenges in maintaining theengagement of residents with sightloss within the care home.Nevertheless, it was acknowledgedthat the busy care home environmentmeant that it was easy for simple stepsto be missed. The research hasidentified several ‘top tips’ for practice,to help care home staff to keep simplethings in mind which can make animportant difference for those withsight loss.

Care home managers appeared morefocused on internal solutions (withinthe care home) in promoting socialengagement amongst residents withsight loss. Much emphasis wasdevoted to the activities coordinatorand other members of staff in ensuringthose with sight loss were ‘integrated’.However, there were indications thatthose homes able to make use ofexternal resources, such as localvolunteers, involvement from faith-based organisations or othercommunity groups, could enable moremeaningful participation. Such anassets-based approach couldpotentially offer opportunity for carehomes to enable greater engagement,but without the expectation that busystaff must simply ‘do more’.

FINDINgS

FINDINgS

there are easy, simple things that can be done

day to day to improve purposeful social

connections for those with sight loss.

it's estimated that half of care home

residents experience sight loss & are more

likely to feel lonely

FIND OUT MORE: bit.ly/sight-loss-uni-of-york

n When using a well-established measureof loneliness, most participants in thisstudy reported that they were notlonely or isolated.

n In interviews, the research team foundthat loneliness was a problem for someresidents with sight loss, and it ispossible that their sight loss made itmore difficult for this to be addressed.Some of this can be countered withcloser attention being paid to simpletips to maintain engagement (which areeasy to forget in the context of a busycare home) – and a final researchoutput includes a large visual poster toassist staff to put these into practice.

n Activities within the care home did notoffer sufficient stimulation for someresidents. In some instances, attemptsto ‘integrate’ residents with sight lossmeant that they were engaging inactivities that had little meaning orvalue. Where activities are notadaptable for people with sight loss, thisresearch suggests it is better to findalternatives than to encouragesuperficial engagement.

n The study also found the most valuedcontacts and networks appeared to beoutside the care home, and werecommend research to explore thevalue of local volunteers and othercommunity assets to support morepurposeful engagement in care homes.

CONCLUSIONS & IMPLICATIONS

The research was carried out by Dr Parvaneh Rabiee (Principal Investigator),Dr Rachel Mann, Dr Mark Wilberforce, Professor Yvonne Birks at theUniversity of York.

Further details are available from Professor Yvonne Birks at:Social Policy Research UnitDepartment of Social Policy & Social WorkUniversity of YorkHeslingtonYorkYO10 5DD

yvonne.birks@york.ac.uk

The School for Social Care Research was set up by the National Institute for HealthResearch (NIHR) to develop and improve the evidence base for adult social carepractice in England in 2009. It conducts and commissions high-quality research.

NIHR School for Social Care ResearchLondon School of Economics and Political ScienceHoughton Street WC2A 2AE

Tel: 020 7955 6238

Email: sscr@lse.ac.uk

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The study represents independent research funded by the National Institute for Health Research (NIHR)School for Social Care Research (NIHR SSCR). The views expressed are those of the authors and notnecessarily those of the NIHR SSCR, NIHR or Department of Health and Social Care,