saying it as it is

SAYINGit as it isExperiences of Gypsies andTravellers caring for familymembers living with dementia

Report compiled by: Dr Pauline Lane, Dr Siobhan Spencer, Dr David Smith, MuzelleyMcCready, Muzelley Roddam, Janie Codona and Shirley Barret

2 Saying it as it is

‘It would be a good thingfor them to know, it’s notonly the people in houses

that gets this kind ofdisease’

Saying it as it is 3

Part One: Background to the study

1.1. Rationale and aims of the study 7

1.2. What do we know about Gypsies and Travellers in the UK? 7DemographicsDiscriminationAccommodationAuthorised trailer sitesChanges to the planning definition of being a GypsyCultural and social practicesHealth

1.3. Thinking about dementia 10What is dementia?Person-centred careDementia in Gypsy and Traveller FamiliesUK Policy Context

1.4. Carers supporting people living with dementia 11Learning to become ‘a carer’What is known about Gypsies and Travellers as carers?

Part Two: Research Methods

Recruiting participants 13Informed consent 13The interviews 13Data coding and analysis 13Limitations of the study 13About the carers we interviewed 15

Contents


Part Three What did we learn from the carers? 17

The recognition of dementia 17A significant event 17Seeking a diagnosis 18

3.1. Everyday life as a carer 19Maintaining normal activitiesSupporting multiple health needsEncouraging loved ones to eatCaring roles and family relationshipsChanging gender roles

3.2. Offering dementia care in a trailer 23Caring on a permanent trailer site

3.3. Seeking external support 25Culturally inappropriate care offered by paid care professionals

3.4. Carers coping with challenging behaviour 28Coping with violence against carers

3.56. Making the decision to move a loved one into a care home 30

Part Four: Summary of findings and recommendations 32

Bibliography 36

Background to the study

Dementia is an issue of global concern with anestimated 50 million people living withdementia worldwide, and an estimated920,000 people living with the condition in theUK (World Health Organisation, 2020,Wittenberg et. al. 2019). It has also beenestimated that there are over 25,000 peoplefrom ethnic minority communities living withdementia in England and Wales (ParliamentaryOffices of Science and Technology 2018).Research also indicates that the number ofpeople from ethnic minority communities livingwith dementia will increase in the future(Koffman, 2018) and therefore ‘taking actionnow to get appropriate services and support inplace will help to ensure people can access thesupport they need’ (All Party ParliamentaryGroups on Dementia, 2013, p. 11). As ethnicminorities, Gypsies (and Travellers) have beenrecognised as one of the most marginalisedethnic groups in the United Kingdom (Womenand Equalities Committee, 2019) and data ontheir health and social care needs is sparse.Currently there is no national data on thenumbers of Gypsies and Travellers living withdementia (Tilki, 2016) and very little knownabout the experiences of Gypsy and Travellercarers. Therefore this report is timely, as it helpsto ‘give a voice’ to the experiences of Gypsiesand Travellers who are caring for familymembers living with dementia. We hope thatthis study will help service providers andcommissioners to develop more culturallysensitive and inclusive dementia services.

Research methods We conducted eleven in-depth, semi-structuredinterviews with carers in the East of Englandand Derbyshire living in their trailers (caravans)and houses. The study was developed inpartnership with researchers from the

Derbyshire Gypsy Liaison Group, One Voice 4Travellers (in East Anglia) and researchers fromAnglia Ruskin University. We are indebted tothe eleven carers who kindly shared theirexperiences of supporting family members whowere living with dementia, and we are gratefulto Anglia Ruskin University for funding thestudy.

Key findings

Recognising dementia: The early symptoms of dementia can bedifficult to recognise and our research foundthat while many of the carers had noticed thata family member was having problems withtheir memory, sometimes it was a dramaticincident (such as a home fire) that signalledthat there was a serious issue. Several of thecarers indicated that there was reluctance bythe person living with dementia to get adiagnosis and none of the carers reported thatthe person being cared for had been formallyassessed. This was due to a number of factors,including stigma related to dementia and fearthat relatives might be removed from thefamily.

Everyday life as a carer Most of the carers suggested that there was acultural expectation that the family should beresponsible for older family members and theywere willing to offer support although some ofthe carers were also looking after children andother relatives, and clearly this waschallenging. It was evident that as thecondition progressed, that carers needed toplay an increasing role in the lives of theperson with dementia and this was oftenstressful. Carers described situations wherethey were concerned for the safety of theperson (due to them wandering off in the


Executive Summary

night, forgetting to eat, starting fires etc.) aswell as the risk to themselves or others, (whenthe person they were caring for became violenttowards them.)

Changing gender rolesIn traditional Gypsy and Traveller families,caring and responsibility for the home is oftenundertaken by women, and many of the carersin our study were women. However, ourresearch also found that men were primarycarers and even when women were the maincarers, many of the younger men in the familyalso offered care and support to the personliving with dementia.

Dementia care in a trailer The majority of carers who took part in thisstudy, were, or had been, living in a trailer. Itwas interesting to note that living in a trailer initself did not present a barrier to offering careto someone with dementia. However, thelocation of trailer did present challenges, forexample, not all of the carers had access to anauthorised stopping place, and not all of thecarers had access to basic facilities, such as hotwater. Some carers also told us how they hadto give up their traditional nomadic life andmove into housing, in order to support afamily member living with dementia. However,the carers who were living on permanent trailersites (with access to facilities), stated that theyfound that trailer life continued to offer goodaccommodation, as the family workedtogether to offer care and support for theperson with dementia.

External/professional support andinappropriate care by external agenciesThere seemed to be a cultural expectation thatthe families should manage without supportfrom outsiders although the carers who werelooking after someone with advanced

dementia, often recognised that they did needadditional, external support. However, one ofthe significant findings from our research wasthat often the external support offered toGypsy and Traveller families by health andsocial care services, was frequently culturallyinappropriate- especially in relation to personalcare needs (i.e. washing, toileting etc.). Thisoften resulted in the family rejecting anyfurther external care, even though they neededadditional support.

Carers coping with challenging behaviourUnfortunately, dementia inevitably results inbehavioural changes and this can be a majorsource of distress for carers. Our researchfound that in the advanced stages ofdementia, some of the carers wereexperiencing violence from the person theywere caring for, these experiences ranged fromthem damaging objects, to more extremephysical violence. In some instances, theaggression and violence towards the familycarers had escalated to the point where thefamily were no longer able to manage, andthey were forced to look for nursing care.

Making the decision to move a loved oneinto a care homeClearly the decision to move a loved one into acare home is a difficult decision for anyone.Our findings indicated that families supportingpeople in the early stage of dementia did notseem to envisage that they would move theirloved ones into care. Our research suggeststhat families only took this decision when asthe illness had progressed into the advantagedstages of dementia, and they were no longerable to cope. For some Gypsy and Travellerfamilies, this was a collective decision,although one carer described how this decisionhad to be made without the agreement of thewider family, and clearly this was painful.



1.1 Rationale and aims of the study

There are an estimated 885,000 people livingwith dementia in the UK (Wittenburgh et al.2019). Of these, 25,000 come from ethnicminority communities and with the ageingpopulation, this number is increasing (All PartyParliamentary Group, 2013). However, despitethe numbers of people from ethnic minoritycommunities living with dementia, their needsare often not recognised in servicedevelopment and they are often “invisible”within dementia research (Jeraj and Butt,2018, Whitman, 2019). The absence of ethnicminorities from research is important, becausehealth and social care provision is often basedon research evidence, and consequently theneeds of ethnic minorities are often neglectedin service design and delivery (AlzheimerEurope, 2018). However, while Gypsies andTravellers have been recognised as one of themost marginalised ethnic minorities in theUnited Kingdom (Women and EqualitiesCommittee, 2019), there is a distinct lack ofprimary research on dementia and the needs ofGypsy and Traveller carers. Therefore, thisreport is timely, as it helps to ‘give a voice’ tothe experiences of Gypsy and Traveller carersand we hope that this study will help serviceproviders and commissioners to develop moreculturally sensitive services that are responsiveto the needs of Gypsies and Travellers livingwith dementia and their carers.

Aim of the studyOne of the most important aims of this study isto increase the understanding of some of thechallenges that Gypsy and Traveller carersexperience when caring for loved ones who areliving with dementia. However, we also wantedto

• Identify some of the cultural barriers that

Gypsy and Traveller carers experience inaccessing dementia support services.

• To highlight some of the family strategiesused to offer support to loved ones livingwith dementia.

• To identify some of the pressures andconcerns that carers face when trying tooffer care and support to loved ones livingwith dementia.

• To make recommendations to health careprofessionals, commissioners, serviceproviders and policy makers on how tomake dementia services more accessibleand culturally appropriate to carers andtheir families

1.2. What do we know aboutGypsies in the UK?

Romany Gypsies were first recorded in Scotlandin the 15th century (Dawson, 2005) andlinguistic and genetic evidence has confirmedthat they originated from India and migratedacross Europe (Mendizabal, et al. 2012).Historically, the word ‘Gypsy’ originated fromthe mistaken belief that they originated fromEgypt, or the Middle East and thereforefamilies were often referred to as ‘Egyptians’ –later to become known as Gypsies. Today theword Gypsy is used to describe RomanyGypsies (spelt with a capital ‘G’). In England,Romany Gypsies have been legally recognisedas a distinct ethnic group since the 1989 andIrish Travellers were accorded this status in2000. Consequently, Gypsies and Travellershold protected characteristics under the UKEquality Act (2010) meaning they are legallyprotected against racial discrimination.However, despite equality legislation, they have

Part One: Background to the study

been identified as being amongst the mostdisadvantaged ethnic minority groups in Britishsociety (the Equality and Human RightsCommission, 2018) and many Gypsies andTravellers will have faced a lifetime of poverty,social exclusion and discrimination (CabinetOffice Race Disparity Audit, 2018, UnitedNations Special Rapporteur, 2018).

Demographics It is difficult to know exactly how many Gypsiesand Travellers live in the UK, as many peoplehide their identity due to discrimination(Equality and Human Rights Commission,2016). The last national census suggested thatthere were 58,000 Gypsies and Travellers livingin England and Wales (ONS, 2011), however,this is believed to be a significant undercount,and other reports have estimated that there areover 300,000 Gypsies and Travellers living inthe UK (Friends Families and Travellers, 2020).Gypsies and Travellers are usually considered tobe ‘young communities,’ with only 6% of thecommunity living beyond 65 years (ONS,2011), which may in part, explain why therehas been such limited research on the needs ofolder Gypsies and Travellers and morespecifically, on the needs of carers supportingfamily members who are living with dementia.

DiscriminationSeveral governmental reports have highlightedthat Gypsies and Travellers are often subjectedto extreme prejudice, and often experienceassault and hate crime (Cabinet Office RaceDisparity Audit, 2018, United Nations SpecialRapporteur, 2018). Indeed, a number ofauthors have stated that discrimination againstGypsy Traveller and Roma communities remainsthe last bastion of ‘acceptable’ racism in Britain(The Traveller Movement, 2017, Hutchinsonand Chihade.et al. 2018).

AccommodationAlthough the majority of the community live inhousing (Smith and Greenfields, 2013, Officefor National Statistics, 2011) many Gypsies andTravellers continue to follow a traditionalnomadic life. For centuries nomadic Gypsieshave been permitted to use ‘common land’ aslawful stopping places to rest their horses, findlocal employment, and meet up with familyand friends. However, successive governmentshave removed their access to these spaces andtoday they face a serious lack of authorisedstopping places and permanent sites (Cottle etal, 2019, Richardson, 2020). Consequently,many Gypsies and Travellers are forced intostopping on unsafe and unsuitable land andface constant evictions. This often placesfamilies under considerable mental andphysical stress (Lau and Ridge, 2011, Lane andSpencer, 2019) and clearly this has importantimplications for carers of people living withdementia. Interestingly, research suggest thatthe likelihood of living in a trailer generallyincreases with age (Centre for Policy onAgeing, 2016) which may indicate that manycarers who are looking after family who areliving with dementia, are potentially living onthe road. However the age structure of Gypsyand Traveller residents living on permanentLocal Authority trailer sites tends to be oldertoo, so this also could be part of theexplanation for the number of the ageingpopulation living in trailers.



Authorised trailer sitesHowever, although many nomadic Gypsies andTravellers live on authorised trailer sites, oftenthese are not fit for purpose and researchindicates that they are frequently built oncontaminated land, or are close to motorwaysor other land that is unsuitable and often unfitfor human habitation (Equalities and HumanRights Commission, 2013; Richardson, 2007,Scottish Parliament, 2013). Indeed, communitymembers often report that they are frequentlyforced to live in conditions that would not betolerated for any other sections of society(Lane, Spencer and Jones 2014).

Changes to the planning definition ofbeing a GypsyIn response to poor quality sites and a lack ofplaces to stop, some families choose to buyland and apply for planning permission tostation their trailers /caravans. However,planning permission is frequently denied toGypsies and Travellers and statistics cited by theEuropean Court found that 90% of planningapplications made by Gypsies had beenrefused, whereas 80% of all other (non-Gypsy)planning applications had been granted1

(Willers, Johnson 2020). In recent years,changes to the planning laws (Planning Policyfor Traveller Sites, 2015) has also meant thatthe definition of who might be considered asGypsies or Travellers for planning purposes haschanged2 as families must now ‘prove’ thatthey are nomadic by searching for work. AsRichardson (2020) suggests, these changes tothe planning laws have created an impossibleconundrum for Gypsies and Travellers, who arerequired to travel in order to prove their‘Gypsy status’, but they are prevented fromtravelling because there is nowhere to stop.Significantly, these planning laws are havinga very damaging effect upon the mostvulnerable members of these communitiesbecause Gypsies and Travellers who can nolonger travel (due to situations such as ill-health, old age, or because they are caringfor people who can no longer travel) are

struggling with the bias in the planningapplication processes.

Gypsy cultural and social practicesSimilar to other ethnic groups, Gypsy familiesoften share many cultural practices and beliefsand although many Gypsies and Travellers arenot literate (though less so among youngergenerations), they have their own languagesRomany (Gypsy) and Shelta (Irish Traveller) andboth have a strong oral tradition to share theirculture and values. Nomadism has traditionallybeen a defining feature of Gypsy and Travellerlife, not only as a way to find employment butalso as a process involving the creation ofmemories through the landscape and timesshared with family and friends, and a culturalway of life (Shubin and Swanson, 2010).Moreover, in many families, nomadic valuesoften continue to inform Gypsy and Travellerpeople’s beliefs and practices even when livingin housing (Lane and Spencer, 2019). For manyGypsies and Travellers, the family is a source ofpride and support and older family membersare usually respected and supported by theextended family (Lane, Spencer and McCready2012). Gypsies, and especially older people,often hold strong cultural beliefs aboutmodesty and hygiene and this influences manyof their daily activities and practices (Spencer,2009). These cultural practices are importantwhen thinking about providing health andsocial care and as this research reportillustrates, many care providers seem to beinsensitive to Gypsy and Traveller cultural needswhen delivering dementia support services.

HealthResearch suggests that Gypsies and IrishTravellers are more likely to suffer poorer healththan the general population this includes lowerlife expectancy, high infant mortality rates,high maternal mortality rates, higherprevalence of anxiety and depression, chroniccoughs, asthma, chest pain and diabetes(Equality and Human Rights Commission,2016, Women’s Equality Commission, 2019).Analysis of data from the 2011 census alsohighlighted that Gypsies and Travellers weremore likely to report a long-term healthproblem or disability, despite their younger ageprofile, than the general population (28%compared to 20%). Similarly, they were alsoreported to be more likely to be limited by along-term health problem or disability, thanthe general population (Office for NationalStatistics, 2011). Yet despite these challenges,research suggests that many nomadic Gypsiesand Travellers find they are often preventedfrom registering with a GP surgery (TravellerMovement, 2017). Clearly, this is significantnot only for routine health care and screening,but also when families need to access supportfor loved ones who are living with dementia.

1.3. Thinking about dementia

What is dementia?The word dementia is often used as ageneralised term to describe a range ofsymptoms that can be caused by a number ofdifferent brain diseases, with Alzheimer diseasebeing recognised as the most common form ofdementia, contributing to 60–70% of casesworld-wide (World Health Organization 2020).Although there is a strong link between ageingand dementia, it is not an inevitableconsequence of ageing and it does notexclusively affect older people. An individual’srisk of developing dementia is made up ofdifferent factors such as age, genetics andlifestyle, although current research indicatesthat heart disease, diabetes, high bloodpressure, obesity, a lack of physical activity and

smoking may put people at more risk ofdeveloping dementia (Livingstone et al. 2017).Unfortunately, dementia is a degenerativeillness, and as the condition progresses peoplebecome increasing frail, experiencing a declinein memory, thinking, language and judgementand this interferes with their ability to conductnormal daily activities (World HealthOrganisation, 2017). In the advanced stages ofdementia, it is common for people to exhibitsignificant changes in behaviour and often thisis challenging, especially when aggression orphysical violence is inflicted upon caregivers(Wharton and Ford, 2014, Alzheimer ResearchUK, 2018).

Person-centred careAlthough the medical model has defined muchof the debate concerning dementia, TomKitwood (1997) has been a pioneer in the fieldof dementia care as he promoted the idea of‘person- centred care’ that focused on theneeds of the individual and their relationshipswith others, as well as the environment thatthey are living in. Significantly, Kitwood (1998)also highlighted the significant role of carers,not only in responding to the person’s physicalcare needs but also in their role in helping tomaintain the story of the person’s life andidentity, as their cognition declines.Importantly, his work recognised thatsignificance of the relationship between the



person doing the caring, and the person beingcared for, and his work laid the foundations forlater discussions on how to live well withdementia (Small, 2007); the role of memory inidentity (Sabat, and Collins, 1999); thesignificance of person-centred care (Brooker,2004, 2006) and the value of relationship-focussed care (Kontos, 2005). Moreover, in thelast few years there has been a growingmovement to recognise the human rights ofpeople living with dementia (Butchard andKinderman, 2019, Cahill, 2018).

Dementia in Gypsy and Traveller FamiliesVery little is known as dementia in Gypsies andTravellers, although one study by Rattigan andSweeney (2018), sought to understandcommunity awareness of the symptoms, aswell as the ways to reduce the risk ofdementia. This study found that although theparticipants had a good understanding of thesigns of dementia, they showed less awarenessof steps they might take in order to reduce therisk of dementia. This study also found thathealth campaign messages about reducing therisk of dementia were not reaching Gypsy andTraveller communities, mainly because most ofthe information about dementia depended onthe written word and many communitymembers are not literate. Many participantsalso stated that they would not approachdementia services due to their concerns abouta lack of cultural appropriateness.

UK Policy ContextWith increased concern about the risingnumber of people living with dementia,successive governments have developed a

number of strategies including The PrimeMinister’s Challenge on Dementia 2020(Department of Health, 2015) the Dementia2020 Challenge: 2018 Review Phase 1(Department of Health, 2018) and the NHSLong Term Plan (Department of Health andSocial Care, 2019). However, it has only beenin recent years that there has been arecognition that mainstream services forpeople with dementia are not meeting theneeds of people from ethnic minoritycommunities (Powell and Baker, 2019).Significantly, the government review of theDementia 2020 Challenge (published by theDepartment of Health in 2019), was the firstgovernment document to acknowledge thatthe national dementia strategy needed toimprove Gypsy and Traveller awareness ofdementia risk factors in order ‘to achieve parityin risk reduction across the population’(Department of Health, 2019, 22). However, atthe time of writing (2021) little progressappears to have been made to improve Gypsyand Traveller awareness of the risk factors fordementia.

1.4. Carers supporting people livingwith dementia

It is thought that there are around 700,000families who are providing care for people withdementia in the UK (Dementia Carers Count,2020) and one in three people will care forsomeone with dementia in their lifetime(Powell and Baker, 2019). Research suggeststhat family and friends (i.e. unpaid carers), areproviding dementia care to a value of£13.9billion a year and this is predicted toincrease to £35.7billion by 2040 (Alzheimer’sSociety, 2019). Moreover, it appears thatwomen predominantly carry out most of thecaring responsibilities in the UK (Glasby andThomas, 2018).Clearly, a diagnosis of dementia can often havea profound impact on the individual, as well astheir families and friends and learning to carefor someone with dementia poses many

challenges because of the complex,unpredictable and progressive nature of theillness. Consequently, carers find that they haveto adapt their own lives to the needs of theperson living with the condition, which canoften have an adverse effect on the carersphysical and emotional health (Newbronneretal., 2013, Millenaar et al., 2016).

Learning to become ‘a carer’Although much of the literature talks about‘family carers’ or ‘informal carers’, people donot always define themselves as ‘a carer’,because caring is often considered as anextension of an existing relationship (i.e. beinga spouse, partner, daughter, son, friend etc.).Consequently, many carers do not accesssupport services or information that they need(Carers UK 2016, Parliamentary Offices ofScience and Technology, 2018) although a lackof service provision in some areas also makes itdifficult for carers to access support (Innes etal., 2020). Moreover, there is only very limitedresearch on the needs and experiences ofcarers for people with dementia from minority

ethnic communities (Race Equality Foundation2018, Jeraj and Butt, 2018), so little is knownabout their needs.

What is known about Gypsies as carers? The last national census found that 11% of theGypsy and Traveller respondents were carers,and they were amongst the highest ethniccategory of those providing in excess of 50hours a week of unpaid care (ONS, 2014).However, very little is known about theexperiences and lives of Gypsies as carers, andeven less about Gypsy and Traveller peoplecaring for family with dementia.

1 (see Chapman v UK (2001) 33 EHRR 399 page 420,para 66).

2 removing two words from the planning definition, Gyp-sies cannot be recognised as “Gypsies for the purposesof planning law”, if they have to stop travelling perma-nently through illness.


This study aimed to understand the livedexperiences of Gypsy and Traveller familiescaring for people with dementia. Weconducted eleven in-depth, semi-structuredinterviews with Gypsy and Traveller carers inthe East of England and Derbyshire living intheir trailers and houses. Anglia RuskinUniversity (ARU) funded the study and theresearch was developed in partnership withresearchers from the Derbyshire Gypsy LiaisonGroup, One Voice 4 Travellers (in East Anglia)and researchers from ARU.3

Recruiting participantsPrior to starting the research, the team appliedfor ethical approval to conduct the study fromARU and this was granted in 2019. Theresearch team developed the interview guide,but the researchers (from the Derbyshire GypsyLiaison Group and One Voice 4 Travellers)recruited the participants and conducted theface-to-face interviews.

Informed consentInformed consent is an ethical requirement forall research, and this is usually obtained inwriting. However, as many of the carers are notliterate, the University ethics committee agreedthat we could ask for verbal consent to takepart in the study. However, this is not unusual,as it is well recognised that oral consent can besubstitutes for written consent where peopleare unable to sign a document (World HealthOrganization, 2002) and the oral consent toparticipate in the study was recorded.

The interviewsThese were conducted at a time that wasconvenient for carers. The researchers made itclear that the interview could be stopped atany time and that the carers also had the right

to withdraw from the study. On meeting thecarers, the researchers told them about thestudy again, and they were assured that theirreal names would not be used in anypublications. The carers were asked if theywould give their informed consent (verbally).All of the carers kindly gave their permission toa) participate in the study, b) to allow theresearcher to record the interview and use thedata.

Data coding and analysisAll the recorded interviews were transcribedverbatim and during the transcription process,all the participants’ names and location detailswere removed, in order to protect the identityof the carers and the person they were caringfor. All the data was stored in accordance withthe UK Data Protection Act (2018) and ARUregulations. In common with other studies(e.g. Porter el al, 2006), two members of theresearch team coded the data separately andthen discussed the findings (i.e. Siobhan fromthe DGLG and Pauline from ARU). The datawas analysed using thematic analysis and thefindings were generated by the data (Braun &Clarke, 2006). Firstly, we identified theemerging codes within each interview andthen we looked across the codes and analysedthe data for emerging themes. All theresearchers reviewed the full draft report priorto publication.

Limitations of the studyWe recognise that this study has somelimitations due to the fact that we onlyinterviewed a small number of Gypsy andTraveller carers (11n), within the definedgeographical areas of the East Midlands andthe East of England. We are also very awareeveryone is unique and other Gypsy andTraveller carers may have different experiencesfrom the carers represented in this report.

Part Two: Research Methods


About the carers we interviewedWe interviewed eleven carers. Eight of whomwere living (or had been living) in a trailer, ofthese, four were living on the road with noaccess to authorised stopping places, and fourwere living on permanent trailer sites. Theother three carers were living in housing. Fiveof the carers were located in the East Midlandsand six in East Anglia. Five of the carers werelooking after their immediate family (i.e.mother, grandmother, husband), while six werelooking after people in their extended family(i.e. Aunts, Uncles, Brother, brother-in-law). Allof the carer’s names have been changed inorder to protect their identity and oldermembers of the community (aged over 45),have been addressed as Aunt or Uncle in thisreport, as a sign of respect.

Vera is aged 40 is also the mother of threechildren and is also the main carer for her Auntaged 78 – who is now living with fairlyadvanced dementia. The family are nomadicand are currently living in the East Midlands ina disused factory yard, this is a ‘tolerated site’where the council have established a waterconnection, portable toilets and collect refusefrom the site.

Eunice is aged 38 and is also caring for herAunt who is living with dementia. However,they also have some support from theextended family. The Aunt is living in housingin the East Midlands, while Eunice is living in atrailer on the road.

Aunt Grace is aged 59 and is also living in atrailer on the side of the road and is caring forher brother-in-law (aged 70) who has dementiaand is deaf. Aunt Grace and her brother-in-law,are both living in trailers on the side of the roadin the East Midlands. On the day that theinterview was recorded, Aunt Grace and herrelatives were in the process of having a section61 served by the police.4 This was served on herand her family then had to move their caravansin the early hours of the morning and she hadto try and find to a safe stopping place.

Aunt Charity is aged 66 and she is caring forher husband who is aged 81 years old who isliving with dementia. The couple are living inhousing in the East Midlands.

Aunt Sally is aged 80 and had been caring forher husband aged 84 years old. She lookedafter him for four years before needing toplace him in a care home (due to hisaggression). Aunt Sally and her husband livewere living on a council run trailer site butrecently Aunt Sally has moved into shelteredaccommodation in the East Midlands.

Tillie is aged 39 and is the carers for her UncleMattie who is aged 76. Tillie and her familyhave been looking after their Uncle for sevenand a half years. But over the past few yearshis behaviour has become more challenging,and the family are struggling to manage,especially as he has dementia and musculardystrophy. The family are living in a house in atown in East Anglia.

Mahala is aged 42 and is living on a trailer siteclose to her mum and stepdad, who are livingon a private trailer site in East Anglia. Mahala’smother is aged 67 years old and hasAlzheimer’s disease and arthritis. Mahala hasbeen trying to help her stepdad who retired inorder to look after his wife as her health hasdeteriorated.

Margaret is aged 32 and is married with herown children. Sadly, over her lifetime, Margarethas had to care for her grandmother andmother, both of whom have had dementia.The grandmother lived in a flat and her Motherlives on an authorised site with Margaret inEast Anglia.

Kezia is aged 27 and supports hergrandmother aged 79 who has dementia andcancer. Kezia has two children and her son hasattention deficit hyperactivity disorder andneeds constant support- so she is helping tocare for family with quite different care needs(although for the purposes of this study, weasked her to focus on her role as a carer for her


grandmother). At the time of the interview,Kezia was living on roadside, while hergrandma was on a trailer site in East Anglia.

Uncle John is aged 73 and he is living on atrailer site and supports his brother aged 82,who is in the early stages of dementia and heis also diabetic and has serious bowelproblems. The brother was living roadside in atrailer but he moved into housing in EastAnglia to be closer to his family.

Uncle Henry is aged 57 and was caring for hisAunt aged 72 who had dementia. Uncle Henrylives in a house in East Anglia and his Auntused to live in a bungalow. When the Auntcould not care for herself she moved in withUncle Henry, but finally she ended up living ina care home.


3 The Derbyshire Gypsy Liaison Group (DGLG) has been running projects for the elder and disabled community mem-bers and their carers for the past five years. This has involved working with adult care social services departments andnegotiating the difficulties and dilemma of continuing health care and or social care funding. It is DGLG experiencethat most people in the Gypsy and Traveller community have little, or no knowledge of what is available to them for as-sistance in paying for care.

4 The police have a power to remove ‘trespassers’ under section 61 of the Criminal Justice and Public Order Act. How-ever, it is important to note that successive governments have prevented Gypsies and Travellers for stopping at tradi-tional halting places. Consequently, with few authorised stopping places, nomadic Gypsies have little option but to stopon unauthorised land.

In order to seek help for dementia, the personneeds to recognise that they have a problem,but this is not always easy and it may takesome time for family and friends to notice thattheir loved ones are struggling with theirmemory. Also, it can often be difficult torecognise the early stages of dementia,especially as many of the symptoms (such asdepression and confusion), can be due to otherfactors such as other clinical conditions, theside effects of medication and/ or emotionaldistress (such as bereavement).

The recognition of dementiaAll of the carers that we interviewed, describedhow they had started to recognise smallchanges over time in their family member, andthis alerted them to the fact that there mightbe a more serious problem. However, most ofthe carers also reported that their loved oneshad tried to hide, cover up, or denied thatthere was a problem with their memory. Forexample, Mahala, who is helping to care forher Mum, explained how she first recognisedthat something was wrong:

“She kept forgetting things and repeatingthings over, like excessive. Over and over andover. I don’t think she really realised herself.Then one day she had a bit of a do, and shestarted realising she was forgetting things and Itold her she was forgetting things. We madean appointment with the doctor and she went,but then after she went, she just, sort of, put itto one side again and just said it was lack ofsleep”.

Aunt Sally who had been looking after her 84-year-old husband also recalled some of theearly days:

“The ol’ boy was bad for a few years beforeme daughter said to take him to the doctor. Hekept repeating hiself, kept asking me for thesame thing even after I’d give it him, or told

him whatever it was he’d asked for…Once oneday we was down the town shopping and wewas in this shop, he was asking the womanbehind the counter for things you could onlybuy in the war! God love him (laughs) the poorwoman’s face was a picture! (laughs again) Buthe kept insisting that he needed them (laughs).He’d sit on the bunk talking about the old daysfor hours.”

Uncle John who is supporting his 82-year-oldbrother had also started to notice smallchanges in his brother’s behaviour and herecalled:

“I’m noticing that now with this dementia heknows he forgets things and instead of comingto meet me yesterday, he went off somewhereelse and saw his daughter. So to get out of it,he made up an excuse to say that he spent thenight with his daughter, that’s why he couldn’tmeet me, which to me, I think he’s trying tocover up that he’d forgotten what he wassupposed to be doing... He hasn’t had adiagnosis, but I think he does realise at thisstage that he forgets things and that is why hetries to cover it up and make an excuse.”

A significant eventWhile most of the carers had noticed a gradualdeterioration in the memory of behaviour oftheir loved ones, sometimes there was adramatic incident, or a series of incidents, thatsignalled to the family that there was a seriousissue. This often resulted in the family needingto step in and make a decision about theirfuture care. For example, Eunice talked abouther early concerns with her Aunt and howthings became more serious, she recalled:

“About 7 months ago we finally got told offthe doctor that she had dementia. We reallydidn’t know what was happening at first, itwas just little things, like not packing hershopping away, or forgetting the children’s

Part Three: What did we learn from the carers?


names. Then she started with more seriousthings, like leaving the taps running or thefront door wide open all one night. Wethought it was her tablets she was on for herchest and that [was] making her dopey maybe,but she kept getting worse and if wementioned it to her she’d start shouting, butwe had to take her to tell the doctor in theend”

Uncle Henry, also described his experiences ofhis Aunt who was living in a bungalow andhow he had to increase surveillance of his Auntin order to protect her, he recalled:

“She was in a bungalow, but she keptwandering off in the night...Yeah, she’dwander off in the night, then I’d go looking forher. Then I arranged for her to have meals onwheels and she kept phoning them up somuch, in the middle of the night... Anyway,and then before that, she used to drive, butshe had an accident, so she couldn’t drive nomore, and I used to drive her about, but shegot so, she couldn’t live in the bungalow nomore, because she put something in themicrowave and set the bungalow alight.”

Kezia who had cared for her mother and hergrandmother, also recalled how the familybecame more concerned:

“Like with my Gran and that, she turned thecooker on one day and near enough set herselfalight. Come down home, and realised, wellshe never realised until she went back homeand it was... clouds of smoke, kettle burnt, sowe used to have to keep a very close eye...”

Listening to carers it seemed that it wasdifficult for them to share their concerns withtheir family and it sometimes it was hard forfamily to accept that someone in the familyhad dementia. For example, Mahala talkedabout her stepdad saying:

“I think her husband didn’t want to accept itand he kept saying ‘it’s just a lack of sleep’ andthey just wanted to deny it, I think. I still thinkother members of my family like sisters andbrothers still want to deny it.”

Mahala also expressed concern that herstepfather did not always allow the widerfamily to help. She thought this this wasbecause the travelling community like to keeppersonal things very private as she explained:

“He goes to all the hospital appointments,which I think makes it hard for me and mysisters, as they’re not allowed to go and hekeeps a lot of it private. It’s guesswork of whatstage she’s at and where she’s at because he’snot sharing, which I think is not really fair tochildren...”

Uncle John who is caring for his 82-year-oldbrother, also suggested that dementia mightbe stigmatised in the Gypsy and Travellercommunity, he explained:

“With the Travellers they think this is a shamefulthing and they would be embarrassed, what wewould say ladged [i.e. embarrassed/ ashamed]but they would be embarrassed to tell someonethat somebody had got dementia or Alzheimer’s,so they would try to keep it to themselves aslong as possible”.

Seeking a diagnosisOur research suggests that there was often areluctance to go to the doctor to get adiagnosis for memory problems. Earlydiagnosis can be helpful as it can improve themanagement of dementia and supportadvanced-care planning. As suggested above,while many of the family recognised that therewas a problem, it was often difficult topersuade the person living with dementia togo to the doctor for an assessment. Forexample, Aunt Grace who is supporting herbrother-in-law, explained that she wasconcerned about him, she reflected:

“He hasn’t had a diagnosis as yet – it is veryhard to get him to go to a doctor. I havemade appointments loads of times and hewon’t go. I don’t know what to do about him.I can’t trust him in his place. He’d set his self afire if l didn’t watch him. He eye sight isn’t allthat good as well, so you’ve got to keep an eyeto him all the time. He don’t know where he ishalf the time...”


Mahala explained that her mother was only 63when she was given a diagnosis:

“I found out she had Alzheimer’s about fouryears ago. I took her to the doctors, but shenever followed it through. Her and herhusband never followed it through... Didn’twant to accept it, I think. Probably didn’t wantto accept that she had Alzheimer’s, eventhough when she took the test it looked likeshe did, but the doctor said that he couldn’tdiagnose until she went and saw the specialist.She never carried on with it until perhaps lastyear where she got fully diagnosed that shehad got Alzheimer’s...

Listening to the carers, it was clear that it oftentook a long period of time to recognise thattheir loved ones were facing problems withtheir memory. Other research suggests thatdelays in recognising dementia and seeking adiagnoses is common (Perry-Young and Owenet al, 2016).

3.1. Everyday life as a carer

Our research has found that as the conditionprogressed, family carers necessarily played anincreasing role in the lives of the person withdementia. This also meant that family rolesneeded to change as the condition progressedand sometimes this was difficult for the carersto negotiate. For example, cleanliness is veryimportant in Gypsy culture and Mahala talkedabout the fact that it would be normal for anolder Gypsy woman to ask her daughter forhelp as she aged. However, as her mother hadAlzheimer’s disease, it had become moredifficult for Mahala to offer support to herMum, she told us:

“I think it’s hard in helping the person cleaningwise. They don’t seem to be cleaning how theywere, but then this person had asked me forhelp before, like, “Would you help me do?”The things she couldn’t do, like in the caravanwash the roof, lift the bed up. It has to becleaned.”

Mahala also suggested that accepting help wasalso a problem for her stepdad, who was themain carer, she explained:

“He cooks the food and does help her a bit,but I think if you insist that she needs help it’slike, “Oh, there’s nothing wrong with me, I cando it.” It’s like I think she feels like you’regetting at her and saying she isn’t capable. Shedoesn’t want to accept that she’s not.”

Maintaining normal activitiesA number of the carers described how theytried to include the person living withdementia into daily activities as much aspossible, while maintain their own lives. Forexample, Aunt Charity described how she triedto include her husband when shopping andthat it was important to take his needs intoaccount:

“I try to reassure him everyday, take him out inthe day for his bird seed, he often tries to buydog food, but we don’t have a dog, hebelieves he has, he hasn’t, ‘cos it died fiveyears ago- but we still have to buy dog foodfor it” (Laughs).


Eunice explained how she and her familyjuggled the demands of everyday life:

“Yeah, the girls come in and see me and wetake Aunt out some days to have a look roundthe town or for dinner and my cousin sits withher on a Friday night while I go to the bingo(laughs)... Well I have to give her, her medicineand make sure she has had a wash or ashower, also make sure she has had a bit offood. Somebody has to stay with her nearly allthe time now. She can be on her own for ashort while but someone on the street keepsan eye out if I go down the shops or anything.We definitely don’t leave her at night in caseshe gets up and we don’t know where she is”.

Supporting multiple health needsA number of reports have suggested that themajority of people living with dementia alsolive with one or more health conditions (AllParty Parliamentary group, 2016, Public HealthEngland, 2019). Similarly, many of the carers inthis study also described how their loved oneswere often facing other health challenges. Forsome of the carers this meant that they hadmore demand on their time. For example,Uncle John who is supporting his 82-year-oldbrother with dementia, talked about some ofthe challenges of supporting his brother’sother health needs:

“He had a problem with his bowel and had togo in and have an operation, but I noticed thatwith this he had to keep ordering the stomabags and he’s also diabetic so he has to orderhis tablets. I’m finding that instead of tellingyou two weeks beforehand that he needs aprescription, he’ll leave it until he’s completelyrun out and then he’ll tell you he needs aprescription, which causes a problem becausethen you’ve got to hurry the people up andsay, “I need it as an emergency,” and that kindof thing.”

Tillie, also talked about the fact that her Unclehad muscular dystrophy disease, and this hadcaused additional problems for him and thefamily, for example she explained whathappened when he fell over:

“His right leg has started to give way with hima lot now… and when he goes down, he’s nosmall man to try and lift, he’s heavy. Yeah, I bethe’s about 14–15 stone and when he’s goingdown, he’s heavy”.

Kezia also described that how her grandmotherhad been diagnosed with cancer and later wasdiagnosed with dementia, she reflected on herexperiences:

“With cancer, that’s a bad thing anyway, whichnobody ever likes, but with dementia you cansee them slipping away and not rememberingand recognising anything. And when you gothere, and they don’t recognise you, andthere’s a close relationship, that is hard. Butwith cancer you know what’s more or lesscoming with that”.

Encouraging loved ones to eatBecause eating well is vital for both physicaland mental health, how older people eat athome represents an important part of theirphysical and mental health management(Berman,et al. 1994). Yet many of the carersmentioned that eating had often become anissue for the person living with dementia.Sometimes they had forgotten to eat andsometimes they refused to eat but many of thecarers had developed strategies to encouragethe family member with dementia to eat. Forexample, Margaret explained how she and herfamily used to encourage her mother to havefood:

“Well, the only thing we could get down her, wedid try. “I’ll have a boiled egg”, she used to say. Iused to buy her an egg, and when I give it toher, “No, I don’t want it”. So, I’d say, “Right,what do you want Mum?” “I’ll have somegrapefruit, but I want plenty of juice”. Now,she’d eat that at times. Then another day you’dsay to her, “Mum, nice bit of fish I’ve got you”.“No, I’ll have some of that other stuff you giveme yesterday”. I’ll say, “What grapefruit Mum?”“Yeah”. She just used to leave it... Not food,don’t want food. So, I used to say, “Nice cup oftea”. “Oh, I don’t want the tea”. I’d say, “You’dlike this one”. So anyway, she used to taste it,


she went, “Mm, that’s nice”. Now she’d drinkthat. But the last three or four mornings Icouldn’t even get a sip of water down her. Shejust didn’t want to know”.

Tillie also explained how eating had alsobecome an issue in caring for her Uncle. Shetold us that the family would take him foodshopping then he would often come homeand throw all of the food in the bin while stillin the packet. He would also eat three or fourcream cakes at a time and sometimes hewould not eat at all. However, the familyworked out a strategy to help him to eathealthier food, she explained:

“he’ll say he don’t want nothing. But you cook,he’ll smell it frying and say, or you know ‘whatare you cooking? And then change his mind,and then he’ll eat. Once he can smell itcooking... and if he don’t like the smell of it,even when it’s cooking, then he won’t have it.He just won’t have it.”

Aunt Charity also described some of thechallenges that she faced and some of thestrategies she used to help her husband to eat:

“He can’t remember what’s on his plate. Whenhe’s having his food sometimes and I have todescribe what he’s eating ‘afore he’ll eat it... Ihave to cut up his food sake of him choking,and he has to have porridge every morning forhis breakfast, if he doesn’t he gets in a mood,he can get very persistent until he does getfood, he is very particular only has a routine hestill thinks he’s a young man...”

Vera, who is living in a trailer, also facedfrustrations in trying to get her Aunt to eat,she explained:

“Well, its hard it is it is really hard, she won’teat what you give her, she puts it through theback window to the floor”

Uncle John also had to keep an eye on hisbrother, he reported:

“I take him the odd meal in and check hiscupboard to see if he’s been and got groceries

because I feel sometimes that if he’s alreadyeaten he forgets that he will need groceries infor the evening, etc. So he needs a bit ofprompting.”

Caring roles and family relationshipsCaring for someone with dementia can bedemanding and there was a strong messagefrom the carers, that there was a culturalexpectation that the family should beresponsible for caring. For some carers this wasdifficult as they were also juggling caring forchildren, or other family members. However,many of the carers highlighted how the familyworked together to support the person livingwith dementia. For example, Aunt Charity toldus:

“I have a very large family and they always helpme out if I need to talk, any help, or anythinglike that”.

Aunt Sally also found support from the family:

“Yes, my children, they would come for a visitand watch him for me while me and me galhad a little time for ourselves. Sometimes theytook him off for the day, to the park orsomewhere, it was nice to spend some time onyourself, when they took him off for a fewhours... Other family members do help me,they take him out visiting his family eventhough he doesn’t remember any of them.”

Kezia, who is a young carer with a family ofher own, similarly talked about how her familypulled together to look after the grandma, shereflected:

“Well, where we was at the time, there wasonly like me and my mum, my Auntie, twocousins, and a sister-in-law. Like my sister-in-law, we never used to put so much on her,because she was only an in-law, but she didhelp when we wanted her to. So, we used totake it, not take it in turns each day to lookafter her, we all had our own set, little jobs.Mum and that used to wash her, we’d go inand clean her trailer up and do her shed. Onewould do the cooking, so we all had a certainlittle bit, we used to keep up”


But Kezia also talked about how hard it was tomaintain her caring role as she also had youngchildren, including a son with special needs,she recalled:

“Sometimes it was very hard, especially whenyou had your own things to do. Then you gotlike young children, what always wanted this,that and the other, and then you was trying tomake space and time to help out down there,so it did used to get quite difficult... somebodyalways had to be there, and if mum was goneout, one of us had to be there for her, so shealways had to have somebody, and we had tomake plans around each other”.

Margaret (who had looked after her motherand grandmother with dementia) also talkedabout the challenge of juggling the needs ofher own family with the needs of her Mum.She recalled:

“yeah, it did make it awkward because you hadto do the washing for her, you had to do thecooking for her... she wouldn’t eat it half ofthe time, food do you know what I mean?Then I had my own children to look after, mysister helped me, but she was away half of thetime, so therefore it left me. And it isn’t right,for my husband to go in and do things for her.He couldn’t change her, he couldn’t do thingslike that, and half the time, if he come in,she’d chuck him out anyway…”

Margaret also told us how role as a carer hadan impact on her marriage, and that it oftencaused tension between her and her husband,she recalled:

“I used to sleep up there, if she got really bad,and then if I walked off, to say, “Right, I’m justgoing to mum’s, see if she’s alright?” He’d say,“You’ve only just come back” and he used toget bored and miserable because he never hadnobody there to talk to, and Bob [namechanged], he could get stroppy at times, andsome nights I used to say, “Right, I’m sleepingwith mum tonight” and then when my sisterwas free, she used to sleep with her. We likeused to take it in turns, but yeah, he could getvery stroppy”.

Changing gender rolesIn traditional Gypsy and Traveller families,caring and responsibility for the home(including cooking, cleaning and childcare) isusually seen as work undertaken by women(Casey, 2014), although more recent studieshave shown that gender roles are changingand an increasing number of Gypsy andTraveller men are now carrying out caring rolesincluding housework and personal care whenneeded (see for example, Lane and Spencer,2019, Spencer 2018, unpublished PhD thesis)

Our research with the carers found that someof the men (such as Mahala’s stepdad, UncleJohn and Uncle Henry) were the main careproviders. However, it was also clear that manyof the young men also offered care in quietways, for example Tillie commented that, ‘oneof the boys’ would get the Uncle into theshower each day, and Aunt Eunice commentedthat the younger men in the family would keepthe trailer clean for her Aunt living withdementia (cleanliness an important part ofGypsy and Traveller culture).

Mahala talked about some of the challengesfor the men in the Gypsy and Travellercommunity, she explained:

“I think it’s worse. I think it’s harder for a malein the travelling community because… well, Isuppose men in all communities- they haven’tgot the patience that a woman has got. Theyhaven’t got the patience. I suppose travellingmen, some are domesticated and a lot aren’t,so I think that makes a big difference too.Whereas if it’s the other way around and it’sthe woman, I think a woman copes better thana male, in my opinion”.

Uncle John who is caring for his 82 year oldbrother stated that:

“I think it’s very hard for a travelling man to bea carer, especially if it was for a womanbecause they’ve got to sort their clothes outand see to their personal washing anddressing”.


Uncle Henry also acknowledged that in manyGypsy and Traveller families there aretraditional gender roles. He suggested thatwhile the women might know about caring forsomeone with dementia, that men often didnot know this. He appeared to be suggestingthat Gypsy and Traveller men might need moreinformation about caring and dementia, hestated:

“You see some, travelling communities, themen go out to work and they leave it to thewomen to sort out the home. Well, all theproblems, what comes into that home, thewomen has to have more responsibility withthat person. I think it’s because the men don’tunderstand more about it. If it was told to themen more, like to the women or young girls,about different things, well then...”

Listening to the carers, it was clear thatalthough they freely offered physical andemotional care to their loved ones (and impliedthat they often found the relationshipemotionally enriching), that the caring roleoften placed the carers under significant strain.Uncle John reflected on some of the dailypressures:

“If you’re looking after somebody 24/7 it canget very stressful, and especially if they don’tsleep a lot so you’re getting woken up in thenight, so you haven’t had a full night sleep. Ithink that you do need to have the regularrespite if you’re looking after somebody 24/7to make it easier to look after somebody”.

Mahala has witnessed some of the pressureson her stepdad, who had undertaken most ofthe care for her mother:

“I think it’s physically draining, in like they’renot getting a rest. They’re not getting a restbecause, I suppose with anybody withdementia, they won’t let that other person goon their own, so that person is not getting arest. They’re not getting a rest away from theperson with dementia or Alzheimer’s becausethey’re clingy to them, like I supposesomebody with a baby that won’t let itsmother out of its sight. So, I suppose it can be

quite draining which makes them snappybecause they’re not getting a break.”

Tillie reflected poignantly on the impact ofcaring for her Uncle, when she described howshe felt:

“It’s not an easy thing to try and care forsomebody what’s got that. It leaves it mark onyou. Forever how long you’ve got to live, itleaves a mark on you. And, hope and pray thatnobody else in your family gets it, and that’swhat you think every day, I hope and pray toGod, nobody else gets it, nobody else in thefamily.”

3.2. Dementia care in a trailer

Research suggests that the social location of afamily can make a difference not only to howthe family view dementia, but also how theyare able to manage the challenges resultingfrom the condition (Hulko, 2002). Gypsies andTravellers have traditionally been nomadic, andthey have a right to live in accordance withtheir traditional, nomadic way of life5 Ourresearch found that for the nomadic familiescaring for someone with dementia, trailer lifeitself was not usually a problem but the widerenvironmental issues, such as a lack of accessto running water, made caring difficult. At thetime we interviewed Aunt Grace she wascaring for her brother-in-law with dementia,the family were living roadside (i.e. wasnomadic) and were about to be evicted by thepolice. Although Aunt Grace did not want tocomment on this during the interview, otherstudies have highlighted that constantevictions create stress and fear (Lane, Spencer,McCready and Roddam, 2019).

However, Vera did highlight some of thechallenges she faced because of the location ofher trailer. Vera is looking after her Aunt who isnow in the advanced stages of dementia andat the time of the interview, they were parked


on a disused factory yard. Vera described thisas a ‘tolerated site’, where the council hadprovided a water tap and a portable toilet andthey also collected the refuse from the site.However, caring for her Aunt’s needs hadbecome increasingly difficult, and Veradescribed what she really needed:

“We need a legal place you know what I mean,so we can get the things you know, it wouldbe a lot easier to shower her in the mornings ,you know she’s clean and all that, its hard tokeep her clean. They [social workers and healthworkers] think everyone has a shower andrunning water! I think they [are] shocked whenthey see what they have to work in and I thinkthat’s why they don’t want to come and cosit’s the Gypsies. They are used to hot waterbeing on the tap and all that you know. Wehave to boil the kettle!”

It also became apparent that some of thenomadic families needed to change their livingarrangements when the health of the personthat they were caring for deteriorated. Forexample, Uncle John explained that his brotherhad been living in a trailer but he was forced tomove when he had bowel surgery and thatnow that he had dementia, the family wereglad that he was nearer to them and living inaccommodation that suited his needs. UncleJohn reflected:

“Yeah, familiar surroundings where he’d beenwhen he was young. So that was one of hisdecisions, to move back closer. Then when hehad the operation [bowel surgery] and he wasliving in a trailer it wasn’t really convenient forhim. He had a small trailer. It didn’t have aninside toilet and bathroom, so he had to goout to the toilet and bathroom. He thoughtthat he’d go into an old people’s housing,which is housing controlled, so people canwatch him. He’s found that since he’s been inthe bungalow, he’s got the shower and toiletthat he needs and he’s managing to look afterhimself.”

Caring on a permanent trailer siteHowever, for other families living on apermanent site, trailer life continued to offergood accommodation, even when a familymember had dementia. For example, Mahalaexplained:

“I don’t think being in a caravan really presentsany problems. One of the reasons that’s easierfor her is she’s not really mobile. I think if shewas mobile you’d be more worried of herwalking off, but because she’s not too mobilethat doesn’t seem an issue... Yeah, I thinkthat’s helped because with Alzheimer’s I don’tthink you could be on a set up where you werewith all other people, like a site, because itwould be too open. On a private site away

from others .. your own placewith gates you can close thegates and you can watch. But ifyou were on a site, I think itwould be harder because there’smore people up and down.”

Aunt Sally and her family werealso living on a trailer site andshe described how the familyhad worked together as a teamto support her husband:

“On the site where we was therewas a utility shed with runningwater and a bath. Every morningme and my daughter would gethim out of bed then take him


into the shed for a wash, my daughter wouldgive him a shave and then l would give him hisbreakfast”.

3.3. Seeking external support

Listening to the carers, it was clear that therewas a cultural expectation that families shouldmanage without the support of outsiders (i.e.people outside of the family or community).Certainly, some of the carers who were lookingafter loved ones in the early stages of dementiaseemed adamant that they would not seekexternal support and many of them felt thatdementia was a private issue. For example,Aunt Sally also emphasised her self-relianceand dependence on her family: she stated:

“No, I never needed anybody else’s help, I gotmy family.”

Aunt Eunice who was caring for her 71-year-old Aunt, was also adamant that she didn’twant external agencies involved in their livesand she explained her fears:

“No, I don’t want the social services cominground, they might want to put her in a home.”

Aunt Grace also reflected:

“I think Travellers hide things, in, they’reprivate people, they don’t want people

knowing things. I think Travellers are sillysometimes there should be a special numberthat they could use if they needed it.”

Other families were also reluctant to ask forhelp. Mahala, who was supporting her motherin the early stages for Alzheimer’s disease withher stepdad, was asked if the family wouldaccept outside help, she stated:

“No, because I think it’s something that youcouldn’t even bring up or discuss. I don’t thinkhe’d discuss it. It’s just going on every day.She’s just getting worse every day, and I don’teven know if he’s even accepting it and they’rejust going about every day and I don’t thinkthey’re even thinking about it...”

However, it was notable that many of thecarers who were supporting those withadvanced dementia, seemed to be more opento external support. Although a few familycarers did put in place some low levels ofsupport in the early stages of dementia forexample, Uncle Henry initially put ‘meals onwheels’ in place for his Aunt, but as hercondition deteriorated, he was no longer ableto manage to support her and she was finallyplaced in a care home.

Other carers also sought more formal support,for example Aunt Charity told us that she wasoffered a care needs assessment6 for her 81-year-old husband and told us:

“Yes, I have been offered but I declined,because we people don’t like to be a burdento others when we can care for himourselves... the Christian church has asked us ifwe need anything, they have been verygenerous and supportive... I don’t think thehealth or social worker people need to knowanything else about my life because we are avery private people, but that’s not saying that ifI really needed them, I wouldn’t call them.”

A local Gypsy support group helped Vera withsome of the practical issues (such as buyingand storing incontinence pads for her Aunt)


and they also acted as an advocate for thefamily and managed to gain access to formalsupport. Vera told us how much sheappreciated the help, she stated:

“The office [The support group] told me aboutcarers support and they got a social workerdown here she’s a nice lady and they havedone a lot to help, we could not have coped atall... one or two different people come, its niceto chat you know, and they will help- like theysort the tablets out and collect them and bringthem, they have helped with sorting out thecare and helped sort out the benefits and allthat...”

However, she also talked about the discrim -ination they experienced:

“They got someone to help me keep her cleanin the mornings. The woman is lovely, but shebrought another woman with her to do themorning a week [when] she can’t come. But

the woman’s husband wouldn’t let her cometo the Gypsies – so we have to struggle on abit...”

Culturally inappropriate care offered bypaid care professionalsWhile some of the carers who took part in thisstudy did benefit from external support, othersfound that the support that was offered wasculturally inappropriate. This was especiallytrue in relation to personal care (i.e. washing,toileting etc.). This was mainly because thepaid care professionals seemed to show little orno cultural sensitivity to the families’ needs. Forexample, it is not considered ‘proper’ todiscuss personal health issues with mixedgenders, and most families have very strictgender roles (and this is particularly true forolder people who may prefer more traditionalways). For example, it is traditional for womennot to undress in front of strangers. Indeed,there is a general shyness about bodily


functions as a whole for Gypsy people (Laneand Spencer, 2019). For example, Margaretexplained how she needed support with carefor her mother near the end of her life, butfound that the health workers were notsensitive to her mother’s cultural needs, shereflected:

“Well, like my mum, when it come to her end,she was in like nappies, and mum… when thenurses used to come out to her, and they sentthese male nurses out, I said to him, “Whatyou coming in here for?” He said, “To see tomum”. I said, “No, you’re not”. I said, “No”.Well, anyway, this other nurse done it, but Ijust watched her, and I said, “No, I can dothis”, and I said to her when she come the nextday, “I don’t want you; I’ve done it, I’vefinished”. So, she said, “Well, I’ve still got tocome in”. So I said, “You can, but he can’t”.Because it’s not our way – it’s not our culture isit? To let men mess about with your mum, Iwouldn’t have that. And, if it was my dad, Iwouldn’t have let the nurse in, it’ll only be amale nurse”

Kezia, who had been looking after hergrandmother who had cancer and dementia,was offered some support from paid careprofessionals but she also suggested that the

care offered was culturallyinappropriate, she explained:

“When the male nursecome in, he thought he wasgoing in, washing her whilstshe was laying in her bed,and he couldn’t understandwhy we wouldn’t let himin... He went to go in thedoor to wash her, and mymum stopped him, she said,“Where do you think you’regoing?”

He said, “Into her”.She said, “Ah, but you

don’t”.He said, “Why?”She said, “Because we

don’t believe a man shouldbe in the same room as where a woman isbeing washed”.

He said, “But why?” and like my mum said,that is our beliefs.

He said, “But I’ve got to go in there to checkher over”.

Mum said, “You can go in there when thatnurse has finished doing what she’s got to do,then you can go in”

And, after that we told the nurses not tobother to come. We’ll do it all ourselves, andright up until she went, we done it...Then mymum told the other nurse not to bothercoming out anymore, and she wanted to knowwhy, and they told her that we was going towash and do her, that was our way of life, sowe didn’t need them to come in anymore.”

It was clear listening to the carers that theyneeded support, however, when the supportthat was offered broke cultural taboos aboutmodesty and gender roles, the carerspredominantly decided to struggle on withoutexternal support. However, not all of the carerswere aware that they could access somesupport and it was notable that both of themale carers we interviewed for this study(Uncle John and Uncle Henry) stated that theydid not know what help was available to themor how to access support outside of the family.


3.4. Carers coping with challengingbehaviour

Dementia inevitably results in behaviourchanges and this can be a major source ofdistress for the carers. Behavioural challengescan vary with different people but they includebehaviour that is a risk to themselves (such asrunning off in the night) and/or risk to others(such smacking, pinching, grabbing, verbalabuse) and more extreme forms of physicalviolence. Although there is limited research onabuse towards carers, it has been suggests thatviolence towards caregivers is the strongestpredictor of nursing home placement and therisk to safety and well-being of caregivers canbe high in these situations (Wharton and Ford2014, Cahill & Shapiro, 2008).Yet caregiversoften receive little information about dealingwith challenging behaviours (Cooper et al.,2010).

Our research seems to indicate that in the earlystages of dementia many of the Gypsy andTraveller families developed strategies toprotect the person they were caring for,however in the later stages of dementia,families were often unable to continue to offercare due to risks to the person with dementia,or the risk of violence to themselves. Forexample, Mahala explained that she wasworried about her mother being exposed toexternal risks, as her mothers’ behaviourstarted changing due to the dementia:

“She couldn’t be left on her own. She’s not lefton her own. There’s always somebody there incase she came out. She’s got worse just lately.I’ve noticed that now I think she could go on awander. When I first realised she hadAlzheimer’s she wasn’t coming out as much asshe was. She wasn’t coming out, but now this isgetting into the second stages she’s coming outmore. So she’s coming out more and you thinkshe could get into, like a child, perhaps get intomore mischief. She’s coming visiting more andsometimes seems a bit lost outside so you thinkshe could get into more danger now so youcouldn’t really leave her on her own.”

Uncle Henry described how his Aunt hadincreasingly become a risk to herself and howthis impacted on his family life, he explained:

“You know, and so you couldn’t take her outto communicate with anybody else, and itmade it very awkward because I’d, at the time Ihad two grandchildren, and even to thegrandchildren, if they were playing that got onher nerves. She didn’t like it, so it came to apoint where the grandchildren couldn’t comeover much... I tried to support her all I could,and at the end it got too much for us, becauseher wandering off, we had to lock the doors,make sure the windows were shut... Even anice day, you had to have the doors locked,because she’d wander off. One morning shewandered off to do some voting, 3 o’clock inthe morning... I searched the village for her,found her, brought her back, but it was gettingtoo much”.

Margaret, told us about her grandmother andhow the family coped with her challengingbehaviour:

“My gran, she had dementia and she didn’tknow what she was doing… [she would] justlike reach out and smack you, or she’d picksomething and hit you with it, but she didn’tknow that she’d done it. Do you know what Imean? And, till afterwards and you explained itto her, then she’d say, “I’m sorry, but I didn’tdo that”. She would get nasty about it. So, weused to say, “You did Gran, you did hit me”.She’d say, “No, I bloody never” and mum usedto say, “Just leave her alone, she’ll rememberit”. But she never did, remember what she’ddone...”

Vera also described how her Aunt hadpresented the family with a range ofchallenging behaviour, she reflected:

“She don’t know what she doing half the time,she has thrown money in the rubbish... shegoes over and over what she already said, itdrives yer mad sometimes it really do... Shecuts up her bedding up and says she wantssomething to eat and then [she] won’t eat...She makes water [urinates] where she sit you


know...? And the other [defecates], Godforgive me for talking about such things. Shewon’t let you take her for shower, she ain’tgood on her legs and I think she frightened offalling. She has to have everything done for herfrom getting up to going to bed.”

Coping with violence against carersIn the more advanced stages of dementia,some carers were faced with managingviolence from the person they were caring for,these experiences ranged from damagingobjects, to more extreme forms of physicalviolence. For example, Tillie who has beenhelping to look after her Uncle talked aboutsome of the challenges that the family faced,she stated:

“He’s very difficult, a very difficult man to lookafter, because he gets so upset so quick overanything, even something what didn’t happen,but he thinks he has. He gets so, he smasheseverything up and he’s got over it, and there’ssomething when it happened, or he thinks has,and nothing has happened, until he calms

down. Or if he has an accident, he’ll wethimself and then he... ah… God… It’s… andhe tries to hide it...”

Tillie went on to describe some of the issuesthat she was managing when caring for herUncle, she stated ‘sometimes he falls over andbecause he is a big man, he is difficult to getup off of the floor’. Equally worrying, Tillie alsotold us that sometimes her Uncle could beviolent, she described her experiences saying:

“You’ve just got to let him calm down. Youcan’t do anything else. You try and takeanything away from him, makes it worse. Itmakes it 50 times worse, so leave him”.

Aunt Sally, who had struggled to look after herhusband found that in the end, his violentbehaviour made it impossible for her tocontinue to look after him. She recalled:

“I’d put him in bed at night and put the tele[television] on for him, and then two minuteslater, he’d be out the bed again, then I


couldn’t get him back in, so I would let him lieon the bunk and sit with him. I had to lock thedoor at night when we went to bed ‘cos hewould try the door all the time. He was a verystrong old man and used to push me about healso hit me sometimes....I didn’t know about any support available oranything like that then, but I did in the endbecause as I said, my husband got very violentand am not getting any younger myself, l justcouldn’t look after him any longer. So we all,my daughter and my family, decided that wewas going to put him in a care home. Wedidn’t like to because, we people, we don’t dothat sort of thing, but my children they told meit was too hard to look after him, it was gettingmore and more, he’d wander off, then thepolice used to fetch him back it was justterrible. It broke me heart to do it but that’swhat we did. I had to [take him to a] carehome because of violent behaviour”

Listening to the carers it was clear that theperson living with dementia remained assomeone who was loved and ‘known’ by thefamily, not only in their family role (asgrandparent, parent, Aunt or Uncle) but alsoas a person who continues to exist in both thepast while also accepting that they are in theprocess of becoming someone different. Whilein some instances the family were able toaccept that their family member had differentneeds and different ways of behaving, in someinstances, where there was aggression andviolence, this new behaviour was notreconcilable with what the family could offerand they were forced to look for nursing care.

3.5. Making the decision to move aloved one into a care home

As suggested above, families are important inGypsy and Traveller culture and there is acultural assumption that families will look afterolder family members (Lane and Spencer,2019). However, in the advanced stages ofdementia, some of the carers found that they

could not manage any longer and had to makethe difficult decision to move their loved oneinto a care home. But even in the early stagesof dementia, some of the carers recognised thedecisions that would have to be made in thefuture. For example, Mahala had alreadystarted thinking about the future for hermother, she reflected:

“Yeah, I think it could get to a stage whereprobably you wouldn’t be able to cope, butthe trouble is with the travelling communitythey don’t believe in putting people in [care]homes and that’s when it becomes a bigproblem. The thing with Alzheimer’s is it wouldbe a 24-hour job and it depends if the familypull together or they don’t... [I’ve] always beenbrought up that you shouldn’t put your elderlypeople in a home, but as I’m getting older Irealise that there comes a time when it’s notpossible. There’s times when it’s not possibleto be able to look after somebody and that’swhat worries me because I can’t see how,when she gets to the last stages, how shecould be looked after at home...”

Margaret talked about looking after hergrandmother with dementia. She reflected onhow difficult it was for the family when hergrandmother talked about her own future, sherecalled:

“She lived on her own, and she used to say tomy mum, “Please don’t put me in any homes, Idon’t want to go in a care home or anything”,so mum said, “No, alright”.

As suggested above, Vera and her family faceda number of problems in caring for their Auntwho was living with advanced dementia, notonly because of the practical issues relating tocare (i.e. only cold running water and aportable toilet) but also because of the Aunt’sbehaviour. She described how a local Gypsysupport group had help to find winter respitecare for the Aunt:

“Yes she went into that respite wintertimebecause we couldn’t do the washing you knowwith her problems, she was ill then as well, soover the winter she was there. We haven’t got


any showers or anything, no place to wash andall that at the side of the road, you know whatI mean. I think we have to stop this, this its likewhat you call it a stigma about sometimes theygoing into care, they feeled shamed to say theyhave had to put someone in care but I thinkit’s the kinder thing. They [are] clean, tidy andwell fed that place she was in was lovely. A lotof our people won’t say they have someone incare but they have, it’s the truth. I think theyneeds to be learning on both sides I do”.

However, some of the carers found themselvesin a difficult position, for example, Aunt Sallyhad struggled to look after her husband but inthe end, his violent behaviour made itimpossible for her to continue to look after himand the family made the decision to move himto a care home. Aunt Sally reflected:

“The people in the care home was lovely,nothing wasn’t too much for them. They let usvisit him whenever we wanted. The first placewe put him in was horrible they did things thatwe don’t agree with...”

Uncle Henry also described how he and hiswife had to manage alone when caring for hiselderly Aunt but finally they reached a pointwhere they could not cope any longer with herbehaviour and she was placed in a care home.However, the family made it know that theydidn’t agree with that decision. Consequently,Uncle Henry found himself in a difficultposition, as he explained:

“Because it was us that put her in there [thecare home], though they didn’t want to helplook after her, but beings it was us two whatput her in there, they’ve pushed us out of thecommunity really”.

Clearly the decision to move a loved one into acare home is a difficult decision for anyone.Our findings indicated that families supportingpeople in the early stage of dementia did notseem to envisage that they would move theirfamily members living with dementia into careand this decision was only taken when as theillness had progressed into the advantagedstages and the carers found that they were nolonger able to offer support. For many Gypsyand Traveller families, this was a collectivedecision, however as Uncle Henry suggested(above), sometimes a decision that had to bemade without the agreement of the widerfamily and clearly this was painful.

5 The Mayor and Burgesses of the London Borough ofBromley v Persons Unknown [2020] EWCA Civ 12,https://www.bailii.org/ew/cases/EWCA/Civ/2020/12.html

6 The local authority has a duty to assess the care needsof a person with dementia. The assessment will deter-mine what care needs they have, and whether the localauthority will contribute towards meeting them.


This final section offers a short discussion on thefindings, and makes recommendations forhealth and social care practitioners andproviders, as well as commissioners.

Summary of the findingsReflecting on the experiences of the carers fromdifferent families, it is clear that we cannot talkof a single carer experience’ and our researchsuggests that although many carers were facingsimilar experiences, this varied according to thelevels of family support, the context of care andmost significantly, the stage of dementia of theperson that they were caring for.

Recognising dementia can be difficult and ourresearch found that while many of the carersacknowledged that a family member was facingdifficulties with their memory, it was oftendifficult to persuade them to get a diagnosis.Some of the carers described how health issueswere often stigmatised in the Gypsy andTraveller community, and this might help toexplain why families often tried to hide thecondition for as long as possible, or deny thatthere was a concern.

Our research found that the families oftenworked together to support the person withdementia. However, although many womenwere the primary carers, our research alsodemonstrated that Gypsy men were alsoprimary carers, and some of the younger menalso had hidden caring roles, (such as helpingout with activities, such as cleaning the trailer).Many of the carers emphasised how much theyvalued family support, especially in the laterstages of dementia, when the person neededcare and supervision during the day and thenight. However, this was not true for everyone,and one carer explained how he and his wifehad received little support from their family.The carers described how they adapted theirown lives to the needs of the person withdementia. Because all of the carers were in anestablished relationship, they clearly played animportant role in the life of the person livingwith dementia. Their pre-existing relationshipwith the person living with dementia, wasimportant in helping to meet their needs (suchas knowing what foods they liked), as well ashelping them to retain their sense ofpersonhood, through discussing past events and

Part Four: Summary of the findings and recommendations


relationships. However at times, some of thecarers were juggling different caring roles, forexample, Kezia was supporting hergrandmother who has dementia and cancer,and she was also caring for her own children,including a son with special needs. Therefore,our research highlighted how important it is,not only to recognise the expert knowledge ofcarers, but also to understand that they mayhave multiple caring responsibilities and needs.Although none of the carers overly highlightedtheir own needs, listening to their narratives, itwas clear that caring for someone with dementiawas demanding in terms of the meeting thephysical care needs of the person with dementia,as well as keeping them safe, and coping withthe emotional impact of caring. Many of thecarers described the disruptions and on-goingadjustments that they had to make to their ownlives, as they responded to the needs of others.Many of the carers seemed to be resilient (andoften stoic) and some of them used humour asan important ‘coping’ technique, however, it wasalso clear that the burden of care wasconsiderable.

Yet most of the carers seemed hesitant to seeksupport outside of the family in part, this manyhave because health issues are seen as privateconcerns. However, our research found thatwhen the families did seek external support, itwas often culturally insensitive, and we heard ofseveral reports where male carers were sent tocarry out personal care for an older Gypsywoman. This was not culturally acceptable, norpatient-centred, and consequently many of thecarers were reluctant to use dementia servicesthat did not meet their cultural needs. This issueof ‘culturally appropriate care’ is important, notonly because of the service providers need tomake reasonable adjustments for people withprotected characteristics under equalitylegislation (Equality Act, 2010) but also becauseculturally sensitive services have the potential forbetter outcomes for both the carer and theperson with dementia.

Another dynamic of caring was the location ofthe family. Listening to the carers it was

interesting to note that living in a trailer, in itself,did not present a barrier to offering care tosomeone with dementia. However a lack ofauthorised stopping places, (see theaccommodation section of this report) and theassociated environmental issues, such as a lackof access to hot running water, often madecaring difficult. However, for other families livingon a permanent trailer site with access tofacilities, trailer life continued to offer goodaccommodation, even when a family memberhad dementia.

Our research found that caring for people in thelater stages of dementia was the mostdemanding with many carers finding that theycould not manage any longer and needed tomake the difficult decision to move their lovedone into a care home. However, this processwas different for individual families, forexample, Aunt Sally had struggled to look afterher husband but his violent behaviour made itimpossible for her to continue to look after him.However, the move into care was discussed withthe wider family who had also been involved inhis care, and so the decision-making was sharedwith the wider family. In contrast, Uncle Henryand his wife had to manage alone when caringfor his elderly Aunt, and finally they reached apoint where they could not cope with herbehaviour and she was placed in a care home.However, their decision was not supported bythe wider family, even though Uncle Henry andhis wife had be left to care for the Aunt alone.

RecommendationsOur recommendations are structured in twoparts. The first part is based onrecommendations made by the carers and this isfollowed by recommendations based on thewider findings of the study.

Recommendations made by the GypsycarersWe asked the carers if they would like to offerany advice to others. Although a number of thecarers did not want to offer any advice, thosewho did, had some interesting insights. Forexample, Eunice reiterated the issue outlined


above, that external agencies were often notsensitive to cultural needs in relation to personalcare needs, she stated:

“I think they need to know we can look afterour own ok. We don’t want them sending nomushes (men) round to wash women ornothing, my poor Aunt would die of fright, but Ido think they need to give people more helpsorting papers and doctors’ appointments andthings ‘cos sometimes it’s hard to understandeverything that you’re being told”.

Aunt Sally reflected:

“it would be a good thing for them to know, it’snot only the people in houses that gets this kindof disease”.

Tillie, who had been caring for her Uncle withher family for over seven years, thought thatother Gypsies did not really understand enoughabout the condition and reflected that:Nobody really wants to talk about dementia.Nobody don’t want to know about it.

Uncle John who is caring for his 82-year-oldbrother also highlighted the need to talk aboutdementia more in the Gypsy and Travellercommunities, he stated:

“I think talking about it and havingconversations that people understand thatdementia and Alzheimer’s is an illness and itshouldn’t be something that should beembarrassing and be swept under the carpet.So you can’t speak out about it. I think it wouldbe better to have conversations with people oneto one, to let people express and know and sothey get aware of there’s other people out theregoing through the same position... And learnabout what’s available for them, yes, because Ithink people can be isolated in this position andthey don’t know where to look for help so theyjust carry on with it.

Uncle Henry also suggested that there was aneed for greater information:

“I think, personally myself, if people, thetravelling community was more of aware of help

they could get, they would want it more. At themoment, they don’t know enough about it andthey haven’t been told anything about it.”

Mahala, who was helping to support her Mum,also highlighted the need for more information,she reflected:

“Well I think not just amongst the travellingcommunity, but I’ve watched different things ontelly, I don’t think there’s enough put in placefor people with Alzheimer’s and dementia.There’s not enough help for anybody out therebecause in a lot of cases it’s one person lookingafter their husband or their wife on their ownwith no help at all. I don’t think there’s enoughput in place myself for anybody withAlzheimer’s or dementia. Not enough help.”

She also had some recommendations on how tosupport people in the community to learn moreabout dementia, she stated:

“We don’t get a lot of literature on things. Iwonder if perhaps people give people discs[DVDs]. I don’t think a lot of people actuallythink about it until it comes upon them...Another thing, like I said, it’s hard becauseyou’re not the sole carer. If you were the solecarer, I think it would be good to learn aboutthings like meals, healthy meals, or if it can helpthe person. Especially perhaps, not so muchAlzheimer’s, but [the] first signs of dementia[also], if people know about healthy food. Iknow they say also walking and exercise canhelp with dementia. I think a lot of people don’trealise that.”

Recommendations based on the findingsfrom this study.

1. Our research found that there is a need toraise awareness in the Gypsy and Travellercommunity not only about dementia butalso on offering information on healthpromotion. These resources should bedeveloped in partnership with Gypsy andTraveller community members, ensuringthese are accessible for anyone with lowliteracy. It would be useful to produce a


series of short films to be distributed onsocial media, so that families can accessthem on their telephone and wider supportgroups can share them on their websites forhealth practitioners. In addition, GPs shouldensure that questions used in memory clinicsare relevant to Gypsy and Travellerscommunities (for example supportingassessments that that do not depend onliteracy7).

2. Our research suggests that many Gypsy andTraveller families are able to offer care as anextended family, however, is important toavoid the assumption that all the carers willhave family support and adult social servicesshould endeavour to reach out to familieswho may be struggling.

3. Our research found that maintaining andsupporting a family member with dementiain a trailer is not generally an issue. However,it is the location of the trailer, and thefacilities that are available to the carer (suchas access to hot water), that influences thequality of care that they are able to offer.Moreover, the Equalities and Human rightsCommission (2019) have also identified thatGypsies and Travellers who have stoppedtravelling due to old age, ill-health,educational needs or being disabled arebeing forgotten in planning authorities’ siteallocation processes (following changes topolicy definitions). It is particularly importanttherefore, that the needs Gypsies andTravellers are considered by Local PlanAuthorities in their general assessment ofhousing needs and special considerationshould be made for vulnerable communitymembers such as people living withdementia and their carers. Moreover, AdultSocial Services should ensure that whereverpossible, that those living with dementiashould be supported to stay in theaccommodation of their choice, if that iswithin a trailer site setting, then resources tosupport care should be available for thefamily.

4. Our research indicated that there is a needfor dementia services to recognise thecultural needs of Gypsies and offer supportthat responds to their cultural needs formodesty and gender appropriate services.Indeed, culturally tailored professional maybe able to help to support carers beforeinstitutionalisation appears to be the onlyfeasible option. Clinical commissioninggroups should develop a protocol inpartnership with Gypsy and Travellercommunities, to avoid anymisunderstandings in relation to culturallyappropriate care and training pack shouldbe available for health and social care staffabout cultural needs, in order to improvethe quality and cultural appropriateness ofcare.

5. Nomadic Gypsy and Traveller families shouldalso be able to apply for Direct Payments, sothat they are in control of the care for theirrelatives. Clinical commissioning groupsshould also consider funding peripateticoutreach for Gypsies, who are often notlinked into support services.

6. Our research suggests while many familiesdid not wish to move their loved ones into acare home, in the advanced stages ofdementia, many families were unable tocope with the significant challenges theyfaced. Therefore access to appropriateinformation, support and advice on respitecare, as well as information on care homesmay be helpful to families.

7 For example, many people in the Gypsy communitymay fail an assessment on the question about their ownbirth date, due to birthdays not being considered impor-tant to be celebrated or remembered, in many of theelder generation. Many Irish Travellers may considertheir baptism date more important and therefor willgive that date. Literacy is a problem so some questionsmay be problematic.


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© All photographs are copyright toJohanna PriceTom McCready..

Front cover in memory of:Ryalla Duffy

‘It would be a good thing for them to know,

it’s not only the peoplein houses that gets this

kind of disease’June 2021