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Health and social care professionals

Professional and informal carers

Health and social care professionals providing dementia care to people from minority ethnic groups have their own understandings of dementia and may also have beliefs about people from minority ethnic groups which have an impact on the care they provide. It might be assumed that most professional carers in Europe have a reasonable understanding of dementia, are able to recognise dementia and consider it as a medical condition. However, a study by Emilsson (2011) into dementia care staff in Portugal, France and Sweden revealed that all perceived the needs and behaviour of residents with dementia through the lens of ageing rather than dementia.

Many health and social care professionals, from all ethnic groups, are not sufficiently aware of services for people with dementia, and especially not of specific services for people from minority ethnic groups. In addition, some have limited or no understanding of the culture of people from specific minority ethnic group to whom they provide care or of their particular needs and wishes. There may, however, be situations in which health and social care professionals are aware of cultural practices but need to insist on certain issues (e.g. to enter a person’s home in a crisis situation without taking off their shoes). A particularly difficult situation is where the social services have received a ‘note of concern’ from neighbours and need to check the wellbeing of a member of the family but are refused entry by relatives (Sagbakken et al. 2018). There are also many situations in which health and social care professionals are restricted with regard to the support that they can provide to people from minority ethnic groups by procedures, hierarchies, structures, funding and lack of training opportunities.

Some of the other issues described in this subject may also apply to both groups. Language difficulties may impact on the ability of professional carers to provide good quality, person-centred care. In a Norwegian study, staff in home-based dementia services complained of not being able to understand their clients from minority ethnic groups, of having to rely on relatives for translation and of not feeling that they understood the situation and needs of their clients (Sagbakken et al. 2018).  This was combined with frustration about finding ways to involve relatives in care (as the latter often express an interest in being involved) and their efforts being ignored (e.g. relatives not attending meetings to discuss how to coordinate care). However, the researchers noted that some people felt uncomfortable and disloyal “talking about everything” in front of strangers, whereas others appreciated the proposed family meetings and yet others, women in general, wanted to attend but were unable to do so because they could not leave the person with dementia alone.  So this is a complex issue which probably requires more flexibility and perhaps a different approach to involving the family. As many people from minority ethnic groups are often diagnosed at a later stage of dementia (if at all), relatives and friends supporting them are unable to leave them at home alone whilst they go out to organise the support they need. The way that support is organised sometimes prevents the very people who need it from obtaining it. 

Another problem experienced by professional carers is how to communicate effectively with families and provide appropriate support for the person with dementia and carers without creating conflict between male and female relatives. Some staff in Norway report differentiating between the information given to male and female relatives to avoid conflicts which nevertheless sometimes occur and then being shut out and not knowing what is going on (Sagbakken et al. 2018). Issues surrounding communication difficulties are central to the development of cultural competence. Seeleman (2014) emphasises the need for cultural awareness, awareness of one’s own prejudices and tendency to stereotype, the ability to transfer information in a way that it will be understood, knowing when to seek external help and having the ability to adapt to new situations in a flexible and creative manner, all of which are skills that can be learned through appropriate training.

Situations may arise when professional carers lack information about something that might be important for a person from a particular minority ethnic group, need more information or are unsure about how a course of action might affect other people. Because of the dynamic nature and multitude of different cultural groups, the provision of intercultural care and support is likely to be an ongoing process of continuous learning and collaboration with those directly concerned and with others who have the relevant expertise and knowledge. Jutlla (2015) suggests that possible lack of confidence of staff to provide care to a person from a minority ethnic group is something that can be overcome with training.

Health and social care professionals occasionally encounter ethical dilemmas. When trying to determine what is ethical (i.e. morally good and right), people tend to rely on shared norms and understandings of right and wrong. This involves drawing on values which have been defined by society as a whole and picked up from other people (e.g. from parents, through education, through relationships with other people and through culture). Ethical dilemmas can involve people from any ethnic group but in the case of people from minority ethnic groups, part of the dilemma and the ways to address it may be influenced by conflicting cultural values and perspectives, as well as communication problems. A person might, for example, refuse intimate care from a healthcare professional of the opposite sex or insist on seeing a doctor or having an interpreter from the majority ethnic group (or even vice versa). Someone may wish to observe religious traditions which are either difficult to arrange or which disturb the wellbeing of other people (e.g. in residential care settings). There may also be issues with relatives’ requests seeming to be in contradiction with an individual’s own interests, which he or she might not necessarily be able to express. A person with dementia might also act in a way that seems to be out character with what seem to have been his/her long-standing cultural habits and values (e.g. a Hindu lady asking to be served beef for dinner, a Sikh man not wanting to wear a turban etc.). Issues surrounding changes of behaviour which are not congruent with long-held values, particularly in relation to people who have dementia, have attracted intense philosophical debate and no clear consensus.

In addition, whilst health and social care professionals may wish to comply with various requests, they are often faced with practical, financial and procedural constraints.  It is not always possible, for example, to obtain a Polish interpreter at three o’clock in the morning and it might be considered abusive to leave a person in soiled continence pads until a female professional carer comes on duty. In some cases, requests may clash with ethical principles and cultural values held by professional carers themselves (e.g. certain requests or behaviour could be interpreted as discriminatory or as overriding a person’s right to autonomy). The cultural values and wellbeing of more than one stakeholder need to be considered and each situation is unique. It is not possible or even desirable to make general statements about who or what is right or wrong and about what should be done.

Ethical dilemmas need to be addressed within an ethical framework, in a systematic manner, with the support of the organisation responsible for care, taking into account the unique nature of the situation and of everyone involved. This will help ensure that whatever action is taken (if indeed action is to be taken), health and social care professionals can defend their decision as being what was right/ethical in that particular situation, at that time and for the people involved, including themselves. There are several possible ethical frameworks which may be helpful such as the “dignity-enhancing framework” developed by Chris Gastmans (2013) and the concept of “conscience-guided reflection” developed by Julian Hughes and Clive Baldwin (2006)[1]

[1] For a brief overview of these frameworks, please see Alzheimer Europe’s report on ethical dilemmas faced by professionals providing dementia care: https://www.alzheimer-europe.org/Ethics/Ethical-issues-in-practice/2015-Ethical-dilemmas-faced-by-professionals-providing-dementia-care-in-care-homes-and-hospitals

 

 
 

Last Updated: Wednesday 08 May 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020) and from the Robert Bosch Stiftung. The content of the report represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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