Older Irish People with Dementia in England

Older Irish people with dementia in England

MARY TILKI Principal Lecturer, School of Health and Social Sciences, Middlesex University, London, UK

EDDIE MULLIGAN Community Development Worker, Leeds Irish Health and Homes Country, Leeds, UK

ELLEN PRATT Community and Health Development Worker, Federation of Irish Societies, London, UK

ELLEN HALLEY Director, Irish Community Services, Greenwich, Bexley, Lewisham, London, UK

EILEEN TAYLOR Carer’s Support Manager, Irish Community Services, Greenwich, Bexley, Lewisham, London, UK

ABSTRACT The Irish community is the oldest minority ethnic community in Britain. Despite an older age profile than general or minority ethnic populations, as well as excesses of mental and physical ill-health and socio-economic disadvantage, the age, poor health and social profile of the community is largely ignored by policy makers and providers. Several of these factors predispose the Irish community in England to a higher incidence of dementia. Unlike other minority ethnic groups with growing numbers of people with dementia, the incidence of dementia is already high. Older Irish people are often reluctant to access mainstream services because they fail to recognise their distinct cultural needs and experiences. Irish third sector organisations provide a range of culturally specific services to older people and their carers and increasingly to those with dementia. This article uses data from a mapping exercise which identifies non-governmental services for Irish people with dementia and their carers, explaining what cultural sensitivity means for them. Changes in the UK government and the ‘Big Society’ agenda pose a threat to dementia services. However prioritising the National Dementia Strategy and revising the National Carers Strategy within this agenda could expand the role of the Irish third sector in England and improve the lives of Irish people with dementia and their carers.

Keywords: Irish; dementia; ethnic elders; informal carers

or almost a decade now, concerns about the older people from minority ethnic groups has F availability, accessibility and quality of increased and there is evidence that the inci- services for minority ethnic elders with mental dence of dementia and depression has risen also health problems have been raised (RCP 2001; (KCL/LSE 2007; Shah 2008). The National Oomen et al 2009). Since then, the number of Dementia Strategy (NDS) identifies that

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although a third of people with dementia live in the focus is on Irish people, many of the issues care homes, the remaining two thirds live in the are common to other BME groups in Britain. It community (KCL/LSE 2007). While there is is also possible that the invisibility of the Irish in clearly a need for specialised health and social Britain is replicated in other parts of the world care, there is considerable scope for community where old migrant communities are deemed facilities which help prevent or delay the onset of assimilated and indistinct from the majority pop- dementia and support carers. The decennial cen- ulation. It is particularly likely when people are sus in 2011 will update demographic data, but not differentiated by skin colour and share the research into the prevalence of dementia and language of the host society. The examples of depression, the availability and uptake of servic- community engagement and best practice are not es, especially in relation to people from Black unique to the Irish or to British society. The and Minority Ethnic (BME) groups is urgent. authors acknowledge the problems of diagnosis BME elders have difficulties getting help and and different types of dementia (Kitwood 1997), those experiencing dementia have specific needs but the term dementia is used in a broad sense to for services that are sensitive to their culture, lan- refer to symptoms of memory loss, communica- guage and religious beliefs. The current econom- tion problems, mood and behavioural changes ic recession and political change geared towards which are experienced in individual ways as a reducing public services pose a threat to this vul- result of specific diseases and conditions. Names nerable group and their carers. However, the of service users, carers and workers have been ‘Building the Big Society’ agenda of the coalition changed to protect confidentiality. government could equally provide opportunities Despite evidence of an older age profile and to capture the ability of communities to solve multiple disadvantages within the Irish popula- their own problems, save local facilities and even tion in Britain (RCP 2001, 2009), there is scant replace state services (Cabinet Office 2010). attention by policy makers, researchers and main- This article focuses on older Irish people in stream service providers. With few exceptions Britain, highlighting the invisibility of this com- (Livingston et al 2001; Sproston & Nazroo 2002) munity, identifying factors predisposing to a high academic research purporting to investigate incidence of dementia and considering what cul- minority ethnic health and social issues define tural sensitivity means to older Irish migrants. It ethnicity within a skin colour paradigm and draws upon the findings of a mapping exercise focus on visible groups such as Asians or undertaken by an umbrella organisation repre- Caribbeans, totally ignoring the Irish (Husain et senting the Irish voluntary (third) sector in al 2009) or aggregating them within the White or Britain (FIS 2010). This research, which originat- other White category (Coid et al 2008). This ed in concerns about this increasingly neglected neglect occurs across the spectrum of physical group, involved a survey of third sector Irish and mental health. The Royal College of Psychia- organisations and statutory providers. Semi-struc- trists identifies the Irish as a BME community tured interviews were undertaken with people with an older population more than twice the size with memory problems, carers and staff provid- of the next largest (Caribbean) group, yet no ing advice, advocacy or culturally specific servic- analysis, commentary or recommendations are es. With the participants’ permission the article is made (RCP 2009). The Policy and Research illustrated with excerpts from these interviews. Institute on Ageing and Ethnicity similarly The findings demonstrate the extent to which demonstrate the Irish population between ages ‘Big Society’ already operates within the Irish 60 and 79 as double that of the Caribbean and community and outlines good practice from Irish three times greater at 80 and above (PRIAE third sector organisations in the UK. Although 2005). However, despite age profile alone being

220 ADVANCES IN MENTAL HEALTH Volume 9, Issue 3, December 2010 Older Irish people with dementia in England highly predictive of dementia, the Irish commu- category (Shah 2007). Consequently, there is a nity is not discussed and there are no recommen- high level of informal care within the Irish com- dations for action. munity (Tilki et al 2009). Older people are large- These influential documents reflect the general ly concentrated within high Irish populations, pattern of mainstream and BME policy research but areas with small Irish communities frequently and mirror campaigning materials from major have sizeable percentages of Irish elders. Popula- lobbying and policy organisations. In contrast, tion density has implications for health and social the Irish third sector in different parts of England support (Karlsen & Nazroo 2002). Therefore eld- reports help sought by increasing numbers of ers who live in areas with fewer Irish people may Irish people with age related problems and signs be more isolated and marginalised than their or diagnosis of dementia (FIS 2010; Tilki et al peers in traditionally ‘Irish’ settlements. 2009). Evidence from these organisations shows As in older groups, many older Irish people are that older Irish people and their carers are dissat- widowed, with some separated or divorced. isfied with or reluctant to access mainstream serv- Because of their occupational history, Irish people ices largely because they ignore the distinct over 50, and especially men are more likely to have culture and experience of Irish people. Clearly remained unmarried than British and other popu- people have a choice and stigma can prevent lations and are therefore more likely to live alone, some from seeking help. However, it is easy for without partners or children to support them overstretched providers to assume stigma and when they become frail. They are also less likely to choice inhibit uptake by Irish people, without be in contact with Ireland due to death of parents questioning the accessibility or acceptability of and increasing frailty among siblings who might mainstream services. have offered support by visits, letters or telephone. Although many Irish people worked in top A PROFILE OF OLDER IRISH PEOPLE occupational groups, the majority of older people IN BRITAIN were employed in elementary occupations, often The age profile of the Irish population in Britain without provision for national insurance or pen- and a myriad social and health factors increase the sions. Lower wages and few if any social insur- risk of dementia and age related mental health ance contributions account for lower pensions problems.1 This article focuses on migration, (Tilki 2003) and explain the considerable socio- socio-economic and health status and distinctive economic disadvantage experienced in later life cultural factors relating to dementia risk. The Irish (Evandrou 2000). Although the age profile means comprise 0.9% of the population in England and significant numbers of the Irish population are Wales, varying from 2.2% in London to 0.2% in retired, it is important to note that economic the North East. Large concentrations exist in met- inactivity due to poor health is particularly high ropolitan and former industrial cities and a signifi- among men between 50 and 65 (Tilki et al cant proportion live in areas ranking high on 2009). Apart from the impact on income, eco- indices of multiple deprivation (Tilki et al 2009). nomic inactivity generally leads to isolation ,caus- The age profile of the Irish community is dis- ing depression and exacerbating the ill-health tinctive with a higher proportion above 50 and which caused premature exit from work. particularly beyond pension age than in general There is robust evidence of high levels of self- or minority ethnic populations. Most BME eld- reported poor health, limiting long term illness ers are among the ‘young-old’ whereas the Irish and disability especially for those aged 50 and are disproportionately represented in the ‘old-old’ over (Tilki et al 2009). Irish people have dispro-

1 The scope of this article is limited but a full account (Tilki et al 2009) is accessible at http://eprints.mdx.ac.uk/6350

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portionately high rates of cancer, heart disease, tions of the stupid ‘Paddy’ in the early 20th century hypertension and stroke, particularly in older age (Curtis 1984) to parliamentary discourses about bands (Harding et al 2008; Wild et al 2007). The the drunken, criminal and dirty Irish in the 1950s incidence of mental illness is high, with excessive and 1960s (Hickman 1998). Although Irish peo- rates of depression, anxiety, psychological ill- ple worked in farms and factories alongside the health (Ryan et al 2006; Sproston & Nazroo English during World War II, they were seen as a 2002; Weich & Mc Manus 2002), suicide and threat to national security and were taunted about attempted suicide (dePonte 2005; Neeleman et al Ireland’s neutrality. However the ‘troubles’ in 1997). In-patient admission rates among Irish Northern Ireland from the late 1960s legitimated people over 50 are higher than in the general the most public expressions of anti-Irish racism population (CHAI 2007, 2008). The Count Me and draconian police powers though the Preven- In Census of 2009 demonstrated that Irish peo- tion of Terrorism Act 1974 (Hickman & Walter ple above 65 were disproportionately represented 1997). While anti-Irish sentiment has arguably dis- in admission figures (CQC 2010). appeared in recent years, the experiences of the past have taken their toll on mental health and are THE IRISH MIGRATORY EXPERIENCE still very vivid for the older generation. Tilki (2003) and Leavey et al (2004) describe complex factors associated with migration and DEMENTIA RISK highlight distinctive, gendered migratory patterns The risk of dementia is reflected in the older age for Irish people compared to other migrant profile of the Irish community and in particular the groups. Migration from Ireland generally proportion of those in the very oldest category involved single people rather than families and where dementia is more prevalent. Although women often migrated alone. The proximity of dementia in visible minority groups is increasing, Britain meant that emigration was largely evidence from Irish community organisations high- unplanned without expectations of settling. lights a high incidence already (FIS 2010; Mulligan While poverty and unemployment are cited as 2007). There is a need for further research, but the main reasons for leaving Ireland, evidence of a existing evidence linking social isolation and desire to escape a claustrophobic, oppressive and depression (Cattan et al 2005) and depression and unfair society is widespread (Leavey et al 2004; dementia (Ritchie et al 2010) resonates with the Tilki 2003). In addition to economic factors, a situation of older Irish people in Britain. significant proportion of Irish men and women The high incidence of people living alone migrated to escape abuse in institutions or the through widowhood, divorce or never having family (Raftery & O’Sullivan 1999). Their migra- married predisposes the older Irish population to tion was unplanned and they carried a range of social isolation. Ill-health, unreliable transport, physical and mental health problems (Ryan et al low income and the fear of going out in deprived 2006), which were compounded by the difficul- areas exacerbates this risk. Social isolation con- ties they faced in Britain (McGee et al 2008). tributes to depression, which increases the risk of Arriving in England afforded freedom and com- dementia (Ritchie et al 2010). Isolation itself panionship for many, but was coupled with dis- contributes to depression and/or dementia and placement, insecurity, loneliness and homesickness. there is nobody to notice withdrawal, cognitive While many found the English polite and respect- impairment or neglect. Isolation limits the avail- ful, they invariably felt like outsiders with little in ability of information, resources and services and common with the host society. Anti-Irish senti- there is nobody to confide in or encourage the ment in Britain has been expressed differently person to seek help. Embarrassment about poor across the decades, ranging from simian representa- memory, language problems, or altered behaviour

222 ADVANCES IN MENTAL HEALTH Volume 9, Issue 3, December 2010 Older Irish people with dementia in England makes people with dementia and their carers when asking for help. The word ‘bring’ rather reluctant to leave home. Past experiences of than ‘fetch’ is also widely used. racism, insensitivity and hostility compound their Maura, a client at the local day centre was reluctance to seek help. Thus diagnosis, access to feeling chilly. She approached two different treatment or opportunities for helpful voluntary members of staff ‘you wouldn’t be a great help and statutory support is delayed. and bring me my cardigan would you?’ The The risk of dementia among older Irish people first person ignored her and later admitted she may be greater because of the high incidence of hadn’t understood what the client wanted. poor psychological health and common mental The second person laughed and repeated it to disorders such as depression and anxiety (O’Con- the others in the room, making teasing nor & Nazroo 2002; Sproston & Nazroo 2002). remarks which Maura found offensive. (Out- Multiple factors contributing to mental ill-health reach worker, South London) among Irish people make it difficult to prevent, but reducing social isolation may help in prevent- Irish people accessing mainstream social or ing depression and accessing early help might therapeutic activities find no account taken of reduce the risk or delay the onset of dementia. the specific migration experience of Irish people Equally, addressing barriers which prevent Irish or the discrimination faced over many decades. people from accessing services could reduce social Oh yeah, so we sing ‘Roll out the Barrel’. isolation and increase the chances of preventing Sure, we worked side by side in the factories, or delaying problems or of obtaining support and but they made it very clear that it wasn’t our treatment which could improve quality of life. war. They jibed us constantly – ‘Ireland sat on Evidence shows that older Irish people are the fence, Ireland stayed neutral’. (Vera – serv- particularly reluctant to use mainstream services ice user, London) and when they do are often dissatisfied with them (FIS 2010; Tilki 2003). Irish people repeat- Nobody was ever rude or said anything to edly complain that regardless of the illness, your face, but it’s hard to forget the ‘No health professionals stereotype and presume alco- Blacks, No Dogs, No Irish’ signs. (Eamonn – hol is the problem: service user, Manchester)

The first question, the very first question is Evidence demonstrates that social integration always, how much do you drink?. I don’t drink and social activities reduce the risk of depression alcohol at all but you get a sense they don’t (Fratiglioni et al 2004; Cattan et al 2005 ) and help believe you. (Bridget – service user) in preventing dementia (Ritchie et al 2010). There is therefore much to gain from addressing the cycle Staff have difficulty with Irish accents, make of social isolation in which Irish people can become few attempts to understand, instead ignoring or entrenched. Making services culturally sensitive to making fun of service users. Although Irish peo- Irish people cannot reduce the risk of dementia, ple speak English, the way English is spoken may but breaking down barriers can encourage them to be misunderstood. access facilities which improve the quality of life for I have to keep repeating myself. Nobody those with dementia and their carers. understands my accent. (Tom – service user with memory problems) THE EMERGENCE AND EXPANSION OF THE IRISH VOLUNTARY (THIRD) SECTOR The following example illustrates how older Anti-Irish racism led to the emergence of volun- Irish people often use a negative construction tary Irish community organisations as points of

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contact and social interaction in areas of high particularly important to appreciate the experi- Irish population from the 1970s onwards. Later, ences of Irish people and be au fait with sensitivi- in response to dissatisfaction and discomfort with ties around institutional abuse, alcohol misuse, insensitive racist mainstream services, community religion and the impact of stereotypes. It is criti- organisations began to provide information, cal that a worker or volunteer can communicate advice, care and support and housing services for in Irish (Gaeilge) with native Irish speakers who the Irish in Britain (Tilki 2003). Recent mapping have lost their ability to speak English after many undertaken by the Federation of Irish Societies years of speaking it. (FIS 2010) shows at least 52 organisations pro- Reaching out to the Irish community has prac- viding specialised services for elderly people and tical and psychological elements. Poor health, ten more offering facilities not specifically for eld- poverty and lack of transport prevent participa- ers but accessed by them. The range is extensive, tion, so several initiatives provide transport to and from sophisticated welfare provision outreaching from lunch clubs. Although Irish people are reluc- vulnerable people and supported housing to self- tant to use mainstream services, a number are also help pensioner groups, lunch clubs and social unwilling to approach Irish services unless tried groups. Many of these services are either funded and recommended by a trusted party. Therefore by the Irish government or developed through several organisations outreach to marginalised grants from Ireland as reciprocity for migrant people using culturally sensitive staff and trained remittances, which supported the Irish economy volunteers. There is undeniable stigma around before the Celtic Tiger. There is therefore wide mental illness, but Irish organisations focus on variation in how organisations engage with Pri- being welcoming, non-judgmental and non-stig- mary Care Trusts, Local Authorities or strategic matising. They value confidentiality but encour- partnerships. Larger groups are commissioned to age people to talk about difficulties and share provide elders with mental health services, health experiences in a safe environment, while helping promotion campaigns, information or advice them recognise the structural roots of problems, services, or venues for chiropody, health checks, rather than blaming themselves. In particular, they or various primary care services. Many small operate a strengths model, recognising problems, groups operate ‘below-the-radar’, run by volun- but focussing on and capturing the strengths and teers, funded by raffles, benefit dances, donations, resilience of the individuals involved. membership fees or charges for activities. Most While images of shamrocks, leprechauns, and organisations involve a combination of both with crocks of gold reek of ‘paddywhackery’, such tra- an army of volunteers, some professional staff and ditional imagery may be very meaningful and variety of precarious funding sources. comforting to vulnerable people or those with dementia. Posters, photographs, county coats of CULTURAL SENSITIVITY AND SERVICES arms, Irish background music and familiar FOR OLDER IRISH PEOPLE accents help people feel safe and at home. Much is made of the importance of welcome in the Irish community, symbolised by the tradi- I enjoyed the local clubs but Paddy was rest- tional céad míle fáilte or ‘hundred thousand wel- less, withdrawn and unhappy. The only place comes’. Clearly a genuine welcome can be offered he relaxed was at the Irish lunch club. He by non-Irish people, but for vulnerable elders and could have a laugh and a joke. … As his con- those with dementia, workers need to be able to dition deteriorated and his speech was mud- understand Irish accents, the way English is spo- dled, his face would light up when he heard ken, pronounce Irish names and respect the cul- the accents. He was with his own people. (Rita ture and heterogeneity of Irish people. It is – carer, London)

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An active and socially integrated lifestyle can Rather than being morbid or reminding people protect against dementia in later life (Fratglioni et of their own mortality, they are reassuring and al 2004). Therefore Irish organisations perform a comforting especially for those without family. significant role in enhancing social support net- Research evidence shows that physical activity works (Cant & Taket 2005), introducing people in midlife can reduce the risk and/or delay the to each other and encouraging contact outside onset of dementia in later life (Rovio et al 2005) group events. The function of lunch or social and a number of Irish organisations provide exer- clubs goes beyond food or social activity. Getting cise sessions for people of differing physical abili- out of the house once or twice a week is stimulat- ties. ‘Tea Dances’ are highly popular afternoon ing for people with dementia as well as offering a events offering social interaction, exercise and brief respite to the carer. continuity as people maintain the traditions of their youth and young adulthood. While some For me it’s a 100% good. The week seems to may be too frail to engage in physically demand- go faster. I love coming and I don’t know what ing ‘sets’ or céilís, many are able to enjoy a gentle I would do without it. (Pat – service user with waltz. This provides not only physical exercise memory problems) but affords opportunities for reminiscence and Stimulation and social interaction with other social interaction. (mainly) Irish people are facilitated through Mapping undertaken by the Federation of music, exercise, bingo, card games and more. Irish Societies (FIS 2010) shows a number of services specifically provided for Irish people I look forward to coming and recounting the with dementia and their carers. These initiatives old times with the group. I enjoy the memory fit comfortably alongside the National Dementia loss sessions each Thursday, meeting with Strategy (NDS) and address some of the wider friends all suffering from memory loss. failures of the strategy (APPG 2010). The aims (Michael – service user with memory prob- of Irish dementia services mirror those of the lems) NDS (DH 2009) particularly in improving com- Speakers give practical information about mat- munity awareness, accessing early diagnosis and ters relevant to older people such as home and intervention, and providing quality information fire safety, health and general wellbeing. The ‘sur- for people with dementia and their carers. Com- veillance’ element of lunch clubs is non-intrusive munity organisations offer a range of culturally but invaluable as workers and peers watch out for sensitive reminiscence and therapeutic activities, somebody who hasn’t attended or who appears to respite for carers, peer support and advocacy be in need of help. Staff or volunteers are well around home or residential care. They are placed to raise awareness of dementia issues, link- increasingly asked to provide culturally sensitive ing people with dementia and carers with relevant services for older Irish people in residential care, statutory services according to need. presumably in response to the All Party Parlia- Irish organisations invariably provide Irish mentary Group report (APPG 2009) on the newspapers, films and DVDs and variously incor- skills gap in dementia care. porate them into discussions which stimulate ver- Irish music is a major focus of the activities in bal abilities, promote conversation and enable Irish community organisations for all participants people to keep up to date with current events. but plays a key role in expressing emotions by Requiem masses, wakes, funerals and memorial people with dementia. Memory for familiar services are an important part of Irish culture music is particularly well preserved even in which celebrate the lives of and demonstrate advanced stages of dementia (Cuddy & Duffin respect for deceased members of the community. 2005). Background music can calm agitation,

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aggression and increase sensory awareness and Pat [husband] seems to have had a good day communication (Wall & Duffy 2010). Music can today. He said he had been to school. He be taped or live but singing is particularly valu- enjoys Thursdays – his face lights up when he able in dementia (Gotell et al 2003). Experience sees the bus coming to collect him. It is the within Irish organisations suggests that singing only time I have to myself. I go swimming and helps with language and people with dementia shopping without worrying and that means a find great joy in interacting with others and lot. (Anne – carer, London) remembering the songs they sang as children. While there are questions about the underpin- One organisation facilitates a carers’ support ning research base, there is evidence that reminis- group, which encourages carers to socialise, share cence contributes to mental health (Westerhof et problems and support each other. It provides al 2010) and can be valuable in dementia care information about dealing with the person with (Moos & Bjorn 2006). Reminiscence involves dementia, avoiding back and other injuries and sharing autobiographical memories and is under- how to handle the abuse that carers often experi- taken by staff who are culturally competent with ence. Outings are organised and carers are facilitation skills. This means understanding the encouraged to contribute their experiences to Irish migratory experience, anticipating and being local conferences and consultations. A ‘Carers sensitive to grief, pain and loss often buried for Cafe’ initiative in another venue allows carers and decades. Facilitators are adept in handling sadness cared for to socialise in an informal environment. at leaving home, bereavement, discrimination in It is run by volunteers who have received demen- Ireland and Britain, perceptions of failure, not tia training and includes reminiscence sessions being able to return home and ending their days which are very popular with those who attend. in another country. Abuses experienced in institu- Given the very limited provision for respite tions or the family emerge in reminiscence from care by local authorities, one particularly innova- time to time but require more specialist help than tive and highly valued initiative is a sitting in reminiscence can offer. service for carers. Trained Criminal Records Bureau (CRB) checked volunteers get to know SERVICES FOR CARERS, RESPITE AND the person with dementia and the carer over a ADVOCACY period of time until the carer is confident enough There is a high level of informal care within the to have a break for a few hours. Irish community, with a significant proportion A significant part of the work of Irish organi- of carers providing 50 or more hours care per sations is providing information about benefits week (Tilki et al 2009). Many do not consider and services and especially about dementia diag- themselves carers and see this as part of their nosis, treatment and management. Advice work- role as wives, husbands or daughters (Tilki et al ers or social workers assist families applying for 2009). As with others caring for people with allowances or more commonly appealing deci- dementia, many carers are old, frail and in poor sions about benefits or care services. Organisa- health. Most have little knowledge about servic- tions provide advocacy around care services, es but some fear that if they ask for help, the home adaptations, respite care or related matters. person they care for will be placed in residential However Irish families frequently have an addi- care. In addition to the lunch clubs, which offer tional barrier to overcome – recognition of the a brief episode of respite for carers, a number of cultural needs of the person with dementia. The Irish organisations provide specific facilities to following casework undertaken by a London give carers a break which the statutory sector organisation highlights the obstacles and discrim- fails to provide. ination which can be faced by Irish families:

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A daughter caring for her elderly parents tive Liberal Democrat coalition government’s Big requested assessment to see what care package Society agenda (Cabinet Office 2010). was needed. During the interview she asked if There is real concern that the Big Society there was any possibility that the care workers agenda is more to do with cutting cost than could be Irish, as her parents would be ‘more empowering communities. It is unclear how comfortable with their own people’. She was much will be invested, where the money will told that they could not provide Irish carers. come from and how fairly it will be allocated. The care package started and there were prob- Additionally, although the delivery of the NDS lems with some of the care workers. The to date inspires no confidence (APPG 2010), daughter complained time and again. She was there is great anxiety that the strategy will not be told she was racist as she only reported black prioritised or even adopted by the coalition gov- workers. She felt very hurt and contacted our ernment. Given the past neglect of the Irish com- project and I worked with her to write a for- munity and the urgent need for dementia services mal complaint to the local council who had there is real concern in the community. commissioned the service. Notwithstanding these concerns, an army of The matter was finally resolved and her Irish volunteers already exists supporting people complaints were upheld. She received an apol- with dementia and their carers. There is further ogy from the care agency regarding being scope to recruit from retired Irish health/social pro- accused of racism. The care agency admitted fessionals, capturing their skills and cultural sensi- her initial request for Irish care workers had tivity. Retraining Irish people who are economically ‘singled her out as a racist’ as she was asking inactive for health reasons would be highly effective for white carers. This was not the case. We for all concerned. However without coordination, pointed out that all the care workers were provision will be fragmented, haphazard and inef- black, but only some had been reported. They fective. Resources are needed to ensure that support did not see Irish people as an ethnic group, but is consistent, reliable and safe through training, part of the white British population.. (Carer’s supervision and checking of criminal records. Support Coordinator, London) Preventing dementia and supporting home care is not a cheap option but it is significantly Sadly, this case study is far from unique and cheaper and more humane than institutional pro- although services for other ethnic communities vision (APPG 2009). The Irish third sector are not satisfactory, there is at least recognition already has a proven track record in delivering a that they have specific cultural needs. range of professional services, replacing or supple- menting public provision. There is considerable BIG COMMUNITY, BIG SOCIETY? scope to expand these, but their survival, let alone Despite the positive examples shown there is con- their expansion, depends on sustainable funding siderable unmet need in relation to older Irish which attracts and retains suitably qualified staff people but particularly those with dementia and to provide services which meet the National Min- their carers. The Irish community in Britain has imum Standards and the battery of legislation taken responsibility for addressing myriad prob- which must be adhered to. lems over several decades but in doing so, has David Cameron, the British Prime Minister has remained under the policy radar. Without grants begun to refer to the third sector as the ‘first’ sec- from the Irish government, larger Irish third sector to underline its importance but his notion of tor organisations in Britain could not have devel- the Big Society (Cabinet Office 2010) needs to be oped and smaller ‘voluntary’ groups would not thought through thoroughly and impact assessed. have survived. This is a lesson for the Conserva- The APPG (2009, 2010) recommendations for

Volume 9, Issue 3, December 2010 ADVANCES IN MENTAL HEALTH 227 Mary Tilki, Eddie Mulligan, Ellen Pratt, Ellen Halley and Eileen Taylor

the NDS and the current call for evidence to and learning disability services in England and inform priorities for carers (DH 2010) are oppor- Wales. London: Commission for Healthcare tunities for different ways of addressing the needs Audit and Inspection CHAI (2008). Count me in. Results of the 2008 of people with dementia and their carers. Within National census of inpatients in mental health these frameworks alone, there is considerable and learning disability services in England and capacity to develop the Irish third (first) sector to Wales. London: Commission for Healthcare provide the help much needed by older people Audit and Inspection with dementia and their carers. While the authors Coid, J., Kirkbride, J., Barker, D., Cowden, F., argue strongly for culturally sensitive services for Stamps, R., Yang, M., & Jones, P. (2008). Raised incidence rates of all psychoses among migrant this section of the community, there is no reason groups. Archives General Psychiatry, 65(11), why infrastructure and administrative functions 1250–1258. could not be provided by partnerships with other CQC (2010). Count me in. Results of the 2009 Irish, BME, voluntary, statutory bodies. The foun- National census of inpatients in and patients on dations of the Big Society are alive and well in the supervised community treatments in mental health and learning disability services in England Irish community in parts of England but they and Wales. London: Care Quality Commission. cannot progress let alone deliver without resources Cuddy, L. & Duffin, J. (2005). Music, memory and and support of government. It is highly probable Alzheimers disease: Is music recognition spared that the experiences of the Irish in Britain are or in dementia, and how can it be assessed. Medical will soon be echoed in other migrant communities Hypotheses, 64(2), 229–235. in different parts of the world and that some les- Curtis, L. (1996). Nothing but the same old story: The roots of anti-Irish racism. London: sons can be learned from the UK. Information on Ireland. De Ponte, P. (2005). Deaths from suicide and References undetermined injury in London. London: London APPG (2010). A misspent opportunity?: Inquiry into Development Centre for Mental Health and the funding of the National Dementia Strategy. London Health Observatory. London: All Party Parliamentary Group on DH (2009). Living well with dementia: A national Dementia. Accessed August 10, 2010 at dementia strategy. London: Department of Health. http://alzheimers.org.uk/site/scripts/download_i DH (2010). Refreshing the national carers strategy nfo.php?downloadID=421 – call for evidence. [Gateway reference number APPG (2009). Prepared to care: Challenging the 14557]. London: Department of Health. dementia skills gap. London: All Party Evandrou, M. (2000). Health statistic quarterly 08. Parliamentary Group on Dementia. Accessed National Statistics, Winter, 20–28. August 11, 2010 at http://www.alzheimers.org. FIS (2010). Meeting the needs of Irish elders: uk/site/scripts/download_info.php?fileID=735 Findings from the mapping of activities of Irish Cabinet Office (2010). Building the Big Society. organisations in England and Wales. London: CAB 059-10. Accessed August 12, 2010 at Federation of Irish Societies. http://www.cabinetoffice.gov.uk/media/407789/ Fratiglioni, L., Paillard-Borg, S., & Winblad, B. building-big-society.pdf (2004). An active and socially integrated Cant, B. & Taket, A. (2005). Promoting social lifetstyle in late life might protect against support and social networks among Irish dementia. The Lancet Neurology, 3(6), 343–353. pensioners in South London, UK. Diversity in Gotell, E., Brown, S., & Ekman, S. (2003). Influence Health and Social Care, 2, 263–270. of caregiver singing and background music on post- Cattan, M.,White, M., Bond, J., & Learmouth, A. ure movement and sensory awareness in dementia (2005). Preventing social isolation and loneliness care. International Psychogeriatrics, 15(4), 411-430. among older people: A systematic review of Harding, S., Rosato, M., & Teyhan, A. (2008). health promotion interventions. Ageing and Trends for coronary heart disease and stroke Society 25(1), 41–67. mortality among migrants in England and Wales CHAI (2007). Count me in. Results of the 2007 1979–2003: Slow declines notable for some National census of inpatients in mental health groups. Heart, 94(4), 463–470.

228 ADVANCES IN MENTAL HEALTH Volume 9, Issue 3, December 2010 Older Irish people with dementia in England

Hickman, M. (1998). Reconstructing PRIAE (2005). Black and minority ethnic elders deconstructing ‘race’: British political discourses in the UK: Health and social care research about the Irish in Britain. Ethnic and Racial findings. Leeds: Policy Institute for Ageing and Studies, 21(2), 289–307. Ethnicity. Hickman, M. & Walter, B. (1997). Discrimination Raftery, M. & O Sullivan, E. (1999). Suffer the little and the Irish community in Britain. London: children: The inside story of Ireland’s industrial Commission for Racial Equality. schools. Dublin: New Island. Husain, N., Chaudhry, N., Husain, M. I., & RCP (2001). Psychiatric services for black and Waheed, W. (2009). Prevention of suicide in minority ethnic elders. CR103. London: Royal ethnic minorities in the UK. Ethnicity and College of Psychiatrists Inequalities in Health and Social Care, 2(1), RCP (2009). Psychiatric services for black and 10–17. minority ethnic older people. CR156. London: Karlsen, S. & Nazroo, J. (2002). Agency and Royal College of Psychiatrists. structure: The impact of ethnic identity and Ritchie, K., Carriere, I., Ritchie, C., Berr, C., racism on the health of ethnic minority people. Artero, S., & Ancelin, M-L. (2010). Designing Sociology of Health and Illness, 24(1), 1–20. prevention programmes to reduce the incidence KCL/LSE (2007). Dementia UK. The full report. of dementia: Prospective cohort study of London: Alzheimer’s Society/Kings College modifiable risk factors. British Medical Journal London and London School of Economics 341: c3885. Accessed August 12, 2010 at Kitwood, T. (1997). Dementia reconsidered: The http://www.bmj.com/cgi/content/full/341/aug05 person comes first. Buckingham: Open University _2/c3885 Press . Rovio, S., Kareholt, I., Helkala, E., Vitanen, M., Leavey, J., Sembhi, S., & Livingston, G. (2004). Winblat, B., Tuomiehto, J., Soininen, H., Older Irish migrants living in London: Identity, Nissinen, A., & Kivipello, M. (2005). Leisure- loss and return. Journal of Ethnic and Migration time physical activity at midlife and the risk of Studies, 30(4), 763–779. dementia and Alzheimer’s disease. Lancet Livingston, G., Leavey, G., Kitchen, G., Manela, Neurology 4(11), 705–711. M., Sembhi, S., & Katona, C. (2001). Mental Ryan, L., Leavey, G., Golden, A., Blizard, R., & health of migrant elders – the Islington study. King, M. (2006). Depression in Irish migrants British Journal of Psychiatry, 179, 361–366. living in London. A case control study. British McGee, P., Morris, M., Nugent, B., & Smyth, M. Journal of Psychiatry, 188, 560–566. (2008). Irish mental health in Birmingham: What Shah, A. (2007). Demographic changes among is appropriate and culturally competent primary ethnic minority elders in England and Wales. care? Birmingham: University of Central Implications for delivery of old age psychiatry Birmingham services. International Journal of Migration, Moos, I. & Bjorn, A. (2006). Use of life story in the Health and Social Care, 3, 22–32. institutional care of people with dementia: A Shah, A. (2008). Estimating the absolute numbers review of intervention studies. Ageing and Society, of cases of dementia and depression in the black 26(3), 431–454. and minority ethnic elderly population in the Mulligan, E. (2007). Irish people with dementia in UK. International Journal of Migration, Health Leeds. An internal report for Leeds Irish Health and Social Care, 4, 4–15. and Homes. Leeds: LIHH. Sproston, K. & Nazroo, J. (eds) (2002). Ethnic Neeleman, J., Mak, V., & Wessely, S. (1997). minority psychiatric illness in the community Suicide by age, ethnic group, coroner’s verdict (EMPIRIC) – quantitative report. London: The and country of birth. British Journal of Psychiatry, Stationery Office. 171, 463–467. Tilki, M., Ryan, L., D’Angelo, A., & Sales, R. O’Connor, W. & Nazroo, J. (eds) (2002). Ethnic (2009). The forgotten Irish: Report of a research minority psychiatric illness in the community project commissioned by Ireland Fund of Great (EMPIRIC) – qualitative report. London: The Britain. London: Ireland Fund of Great Britain . Stationery Office. Accessed August 12, 2010 at Oomen, G., Bashford, J., Shah, A. (2009). Ageing, http://eprints.mdx.ac.uk/6350 ethnicity and psychiatric services. Psychiatric Tilki, M. (2003). A study of the health of the Irish- Bulletin, 33, 30–34. born people in London: The relevance of social

Volume 9, Issue 3, December 2010 ADVANCES IN MENTAL HEALTH 229 Mary Tilki, Eddie Mulligan, Ellen Pratt, Ellen Halley and Eileen Taylor

and socio-economic factors, health beliefs and J. Nazroo (eds.) Ethnic minority psychiatric illness behaviour. Unpublished PhD Thesis, Middlesex in the community (EMPIRIC) – quantitative report. University. London: The Stationery Office. Tilki, M. (2006). The social contexts of drinking Westerhof, G., Bohlmeijer, E., & Webster, J. among Irish men in London. Drugs: Education, (2010). Reminiscence and mental health: A Prevention and Policy, 13(3), 247–261. review of recent progress in theory, research and Wall, M. & Duffy, A. (2010). The effects of music interventions. Ageing and Society, 30, 697–721. therapy for older people with dementia. British Wild, S., Fischbacher, C., Brock, A., et al. (2007). Journal of Nursing, 19(2), 108–113. Mortality from all causes and circulatory disease Weich, S. & Mc Manus, S. (2002). Common mental by country of birth in England and Wales disorders in ethnic minority psychiatric illness in 2001–2003. Journal of Public Health, 29(2), the community (EMPIRIC), in K. Sproston and 191–198.

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