Cultural sensitivity in dementia: The Irish perspective

Cultural sensitivity in dementia: The Irish perspective Dr Mary Tilki Irish in Britain

Informed and illustrated by : • Tom Kitwood (1997) Dementia reconsidered : The person comes first. Open university Press • Papadopoulos I, Tilki M, & Taylor G (1998) Transcultural Care: Issues in for health professionals. Quay Books, Wilts. • Tilki M (2003) ‘A study of the Health of the Irish-born people in London : The relevance of social and socio-economic factors, health beliefs and behaviour’. Unpublished PhD Thesis, Middlesex University • TilkiM, Mulligan E, Pratt E, Halley E, Taylor E, (2011) Older Irish people with dementia in England. Advances in Mental Health. 9, (3), 221-232

CULTURAL AWARENESS CULTURAL COMPETENCE Self Awareness Assessment, Diagnostic & Ø Ø Ethnocentricity Care giving skills Ø Cultural Identity Challenging and addressing Ø Ø Ethnohistory Heritage adherence prejudice, discrimination and Ø Ø inequalities Stereotyping Ø CULTURAL SENSITIVITY CULTUR AL KNOWLEDGE Empathy Ø Health beliefs & behaviours Ø Interpersonal/Communication Ø Trust Ø Anthropological, Sociological Ø Acceptance Ø Biological etc understanding Appropriateness Ø Similarities and differences Ø Respect Ø Ø Health Inequalities Ø Sensitivity Barriers to Cultural The Papadopoulos, Tilki and Taylor Model for Developing Cultural Competence

Person centred dementia care • Philosophical and practical aspects of PCC • Every person valued and worthy of respect • A complex product of biography, life experience, social relationships • Shaped by gender, ethnicity, culture, society • Person with dementia is more than a neurological impairment • Instead actively trying to make sense of and cope with what is happening

Culturally sensitive dementia care • Philosophical and practical aspects of CSC • Every person valued and worthy of respect • A complex product of biography, life experience, social relationships • Shaped by gender, ethnicity, culture, society • Person with dementia is more than a neurological impairment • Instead actively trying to make sense of and cope with what is happening within their cultural framework

Cultural awareness in dementia • Recognise that Irish people are different • The Irish are not all the same! • Recognise personal/professional beliefs about dementia and Irish • Earlier memories relate to experiences following migration, about leaving home, Irish childhood • Home in the heart may be stronger than home in the head!

Oh yeah, so we sing “Roll out the Barrel” Sure, we worked side by side in the factories, but they made it very clear that it wasn’t our war. They jibed us constantly – “Ireland sat on the fence, Ireland stayed neutral” ( Vera, service user- London) Int. F 14. In general I found the English quite helpful………I could never say I found discrimination or unkindness. But no communication once the working day was finished. The Irish girls, we used to go dancing together, but not the English girls. If we met them at the Palais they’d smile and say hello, but no more than that.

Cultural knowledge in dementia • Biography - migration, work, family • Feelings about migration, return home • Social situation, especially social isolation • Recognise past discrimination, racism • Understanding of dementia, fears • Expectations of family care, attitudes to external care, barriers to services

Int. F14. There was so little there, no matter what education you had… Int. M6. I came over with a job to England. I came over with Murphy [construction firm] They had advertisements in the Irish Papers and I just applied and was given a job. Int. F14. I came with the idea that I was not going to stay. We had intended going back then after about three years, but as you can see we never [did], forty odd years and three children later.

Int. M7. I was in an orphanage you know. Physically, emotionally sexually abused –terrible, terrible. I was 16 when I came here. As soon I got out I came over here. I've been all over the world since, twice… running, running, always running. Int. F10. I, and indeed all my siblings, were sexually abused for about three or four years, between the ages of about eight and twelve ………our parents were and still are difficult people and we all suffered emotional abuse. There was some physical abuse but certainly more emotional things. Int. F 13. I was in the hospital after he [father] battered me and threw me down the steps.

Int. F15. When I came to England there was no blacks ,no dogs, no Irish. I remember well, seeing an ad for a flat in the post office. Banged the door in our faces when she heard the accent. Bloody Irish Slam!. Int. F11. I remember being in the gardens at the back of my house. I was in there the time of the Hyde Park bombing. I had my five children with me. And I was ordered out of the gardens. And I didn't know what had happened. I knew nothing about it.

Cultural sensitivity in dementia • Language problems, accents, way of speaking • Loss of first language in native Irish speakers • Pronunciation of Irish names, use of titles Mr, Mrs • Culturally clued up staff and volunteers • Irish environment, symbols, artwork, music • Religious beliefs, practices for some but not all • Celebrate cultural and religious feasts.

Cultural competence in dementia • Use life history to enhance engagement • Challenge stereotypes, sensitive to past experiences • Activities which connect with Irish culture or earlier life in Britain • Culturally sensitive memory work, reminiscence, life review, cognitive stimulation • Involve local Irish groups, parishes, volunteers • Culturally matched carers where possible

“I enjoyed the local clubs but Paddy was restless, withdrawn and unhappy. The only place he relaxed was at the Irish lunch club. He could have a laugh and a joke.........As his condition deteriorated and his speech was muddled, his face would light up when he heard the accents. He was with his own people” (Rita - carer London)

For me it’s a 100% good. The week seems to go faster. I love coming and I don’t know what I would do without it. (Pat, service user with memory problems) I look forward coming and recounting the old times with the rest of the group. I enjoy the memory loss sessions each Thursday, meeting with friends all suffering from memory loss. (Michael, service user with memory problems)

A daughter caring for both her elderly parents requested an assessment to see what sort of care package was needed. During the interview she asked if there was any possibility that the care workers could be Irish, as her parents would be ‘more comfortable with their own people’. She was told that they could not provide Irish carer………………….The care agency admitted that her initial request for Irish care workers had signalled her out as a racist as she was asking for white carers, which was not the case …………. They did not see Irish people as an ethnic group, but part of the white British population. ( Carer’s Support Coordinator London)

Useful reading • Kitwood T (1997) Dementia reconsidered : The person comes first. Open University Press • Papadopoulos I, TilkiM, & Taylor G (1998) Transcultural Care: Issues in for health professionals. Quay Books, Wilts. • TilkiM, Mulligan E, Pratt E, Halley E, Taylor E, (2011) Older Irish people with dementia in England. Advances in Mental Health. 9, (3), 221-232 • Tilki, M, Ryan, L, D’Angelo, A, & Sales, R. (2009). The forgotten Irish : Report of a research project commissioned by Ireland Fund of Great Britain. London: Ireland Fund of Great Britain . Accessed August 12, 2012 at http://eprints.mdx.ac.uk/6350

Cultural sensitivity in dementia: The Irish perspective