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JDC Asks...

Tue 19 Nov 2019

Journal of Dementia Care Vol 27 No 6 November/December 2019 

"What is your top priority for changing the care system to better meet the needs of people with dementia from black, Asian and minority ethnic groups?"

 

A priority action that would improve dementia support for black, Asian and minority ethnic (BAME) communities is the development of reminiscence materials for them. Not enough materials exist even for the larger minority ethnic communities with significant numbers of elders living with dementia. Organisations in the voluntary sector such as the Pearl Support Network have made important strides in developing simple materials that are relevant and evocative, but they need significant support to scale up their availability and impact. With increasing awareness of the relatively higher risk of dementia in the African-Caribbean community and south Asian communities, this is a growing issue. Services could learn from initiatives such as Irish in Britain’s Cuimhne about the value of a culturally specific approach to reminiscence. Irish identity and history are important for people of Irish heritage, yet this is often brushed aside in service provision. And elders from smaller communities, be they Chinese or Gypsy and Traveller communities, are met with incomprehension by services. For first generation migrant communities who grew up outside the UK, the lack of relevance of most reminiscence materials available from mainstream services simply reinforces the experience of their lifetime. The BAME voluntary sector should be more involved in co-production of such materials, or even leading on their development, but there needs to be a targeted, robust and sustained investment to test and evaluate these materials and support their rollout at scale. Only then will we have services that are more “dementia friendly” for BAME people.

David Truswell is an independent healthcare consultant, founder and executive director of the Dementia Alliance for Culture and Ethnicity, and a trustee of Culture Dementia UK.

 

My top priority is recognition of the Irish as a BAME group in Britain. Although fair skinned and (mostly) English-speaking, older Irish people have more in common with African-Caribbean and Asian elders than British people.  The older age profile and multiple risk factors mean Irish communities have high levels of dementia now, although Irish Travellers appear especially prone to young onset dementia. Person-centred dementia care relies on understanding cultural origins and past experiences, but cultural sensitivity is impossible if Irish and British people are considered the same. Irish people may have lived and worked in a locality for decades, but their experiences are different and often negative. Current research and needs assessment either fails to collect Irish data or collapses it into the “white” category. This conceals Irish disadvantage while diluting disparities between visible BAME groups and the general population. Local strategic needs assessments, health campaigns and funding bodies subsequently consider the lack of data as absence of need. Grassroots Irish organisations offer culturally sensitive services while struggling for funding. Most rely on Irish government grants reciprocating past remittances by older migrants, generosity which cannot be taken for granted by those who are not Irish taxpayers. Policymakers and providers have obligations towards Irish people with dementia and their carers. The Irish voluntary sector should be supported to deliver the culturally sensitive care the statutory sector fails to provide. Like other migrants, the Irish have paid taxes and dues to British society and deserve a decent quality of life when dementia strikes.

Dr Mary Tilki is an independent consultant

 

One of the main barriers faced by people from Asian minority groups is a distinct lack of understanding as to what dementia is.  Most commonly they may think that the person with dementia has gone “mad” and the most common way to address that is to hide them away or even lock them away.  These things happen because of the stigma attached to this illness and people are ashamed to share this or even acknowledge it. The other barrier people face is not knowing what services are available for people diagnosed with dementia and their families. Therefore, it is paramount that there is a system in place where people can find the relevant information. Currently this is done through our own organisations because people trust us and will come to us to access the right support. If the care system is to change for the better, we need culturally appropriate dementia care training to be made available to all care staff and a national coordinated approach to recruiting more people from BAME communities into the sector. In addition, information should be provided in appropriate languages for those for whom English is not their first language, not necessarily written but in audio format because a lot of people from the older generation are unable to read or write in their own language. We would also like to see culturally appropriate day services with language support and appropriate activities.

Reihana Bashir is operations manager at Mary Seacole House

 

Irish and Irish Traveller communities are distinct BAME communities who experience an excess of poor physical and mental health, discrimination and socioeconomic disadvantages. Several of these factors predispose them to a higher than average incidence of dementia, despite which their needs are often overlooked by policymakers and care providers. Cultural identity and connections through traditions and practices are crucial in keeping people in these communities well and strong, and even more so in times of failing health including memory loss and dementia.  The majority are white and speak English as their first language, so the general assumption in care services is that their needs are the same as those of the indigenous population. This means that the care delivered does not take account of people’s cultural experiences, history and traditions. There is also evidence of care that reinforces negative stereotypes, which is humiliating and disempowering and leads to a reluctance to access mainstream services for fear of being judged and misunderstood. In consequence, I have more than one top priority for changing the care system.  I would like to see the inclusion of Irish and Irish Traveller communities in ALL discussions and policy around race and ethnicity in service provision.  The workforce should be trained in diverse cultural competencies by specialist community organisations and care programmes should promote cross-cultural understanding and trust.  Finally, the importance of the care-giving role should be recognised and remunerated accordingly.

Breege McDaid is director of Irish Community Care

 

“They look after their own” is a common misconception that has formed the basis for health care service providers assuming minority ethnic families do not require services. This has led to the under-representation of minority ethnic communities in dementia care services. Research has consistently demonstrated the need to improve access to specialist dementia services for minority ethnic communities and has identified specific barriers requiring attention. Interestingly, there has been a considerable focus on the lack of dementia knowledge among minority ethnic communities, but only meagre attempts to address the system-level barriers to accessing dementia services. Perhaps there is a feeling that, by focusing on the stigma attached to dementia by these communities, the onus on the health system to change is removed. But this is not the case. One of the main priorities for us has to be to improve access to dementia services in order to reduce health inequalities. A major barrier is that many families don’t feel health care professionals understand their cultural values. If services are truly person-centred, they must take into account the individual’s cultural needs. Language is often a barrier, which could be addressed by working in partnership with third sector groups to provide translators and BAME dementia champions. Finally, health and social care professionals would benefit from diversity training. Indeed, the Dementia Training Standards Framework launched by Health Education England contains a module on diversity in dementia care. A key priority should be to implement this training across health and social care.

Dr Sahdia Parveen is senior research fellow in the Centre for Applied Dementia Studies at the University of Bradford

 

 

 

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