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Promoting initial help seeking

Understanding dementia and help seeking


Promoting initial help seeking

Whether or not a person seeks help for symptoms (which might be an indication of dementia) depends on several factors which may be influenced by culture. Morhardt, Pereyra and Iris (2010, p.42) describe this as follows:

“Individuals’ knowledge about an illness is generally linked to what they do about it. The literature looking at health behaviors (Leventhal et al., 1984) and mental health literacy (Jorm et al., 2000), suggest that people attempt to understand their symptoms based on what they know about an illness, and that in turn affects their recognition of a problem, whether to seek help, manage or consider prevention (Jorm, 2000; Jorm et al., 2000; Werner, 2003 and 2004). Culture influences how people define, perceive, and respond to illness and explains variations in illness related behaviors” (Andrulis, Brach, 2007; Chrisman, Kleinman, 1983).

This is echoed by Mukadam, Cooper and Livingston (2011) who concluded, on the basis of a systematic review of ethnicity and pathways to care in dementia, that beliefs about the aetiology of symptoms strongly influence whether people from minority ethnic groups access healthcare. The lower socio-economic situation of many people from minority ethnic groups in Europe may also influence help seeking. In deprived neighbourhoods, although there is a higher prevalence of unhealthy lifestyles and low self-management of disease. There is also a lower uptake of health-promoting services (van den Broeke 2017). Many people do not seek help when they first experience concerns. Some of the reasons for this are discussed below. This section focuses on issues linked to initial help seeking. Some of these issues are also relevant to accessing support and care.

How different perceptions of dementia affect help seeking

As with various medical conditions and disability, the perceived cause of dementia often reflects what a person decides to do about it. So if dementia is considered as part of normal ageing (normal being understood as typical or common amongst older people or as non-pathological in the sense of not being abnormal for older people) rather than a medical condition, there may be little incentive to seek medical advice (Alzheimer Europe 2013). If a person starts to exhibit behaviour that relatives find more challenging, the family may start to question whether it is normal or perhaps something else that necessitates medical attention but by then the family may already be in a crisis.   

If the causes are believed to be spiritual, people may consider it more appropriate to pray or consult spiritual leaders or faith healers than their GP (Kenning et al. 2017, Mohammed 2017). In a study by Giebel et al. exploring differences between South Asians who did and did not consult their GP about dementia, there was a significant[1] association between not consulting and the belief that memory problems were given by God and that it was not appropriate to seek medical attention (Blakemore et al. 2018). Exorcism may also sometimes be considered a more suitable approach (APPGD 2013).

The perception of dementia as a mental disorder could have an impact on help seeking as it could be considered as a stigma, bringing shame on the family and affecting the marriage prospects of younger relatives (Rauf 2011). This may also be linked to dementia (or mental disorders in general) being considered as ‘running in the family’ (being genetically transmissible).  In the case of arranged marriages, relatives of the bride and groom typically look into the backgrounds of the family they plan to marry into. Finding out about a mental illness (which may also be considered as hereditary) could result in the family honour being lost (Mohammed 2017). If dementia in a relative is believed to be caused by another’s wrongdoing, then that person may be heavily criticised (as it was that person’s fault) and this may result in extra strain on the family, on willingness to seek help and on subsequent coping (Adamson 2001). A study into attitudes of South Asians towards help seeking found that perceived social pressure was the strongest predictor for not seeking help (Hailstone et al. 2017).

Some of the other beliefs mentioned earlier surrounding the origin of dementia may also interfere with timely help seeking, leading to a focus on blame, bad luck or unavoidable life events (e.g. in the case of perceptions of dementia being due to retirement, bereavement, moving to a new house, loneliness, lack of proper care and support from the family, laziness or weakness of character).

Based on advice from South Asians in the UK, Mukadam et al. (2015) suggest trying to normalise help-seeking, breaking down stigma and emphasising the physical rather than mental nature of dementia. They also suggest using images of people from minority ethnic groups in information materials but there were different views about which age groups or section of the community the information should be targeted at.

Language barriers to help seeking

Language difficulties may result in health and social care providers often not being able to ensure that people from minority ethnic groups are aware of dementia, able to understand awareness-raising materials (even in their own language if illiterate), know where to obtain information and are able to ask for it (Moriarty 2015). In some areas, materials and bilingual care workers may be available but people do not always know about them and may wrongly assume that such support is not available. Some people with dementia from minority ethnic groups find it difficult to communicate potential symptoms of dementia to their families or their GP. This could be due to a number of factors such as not realising that the symptoms they are experiencing might be linked to a medical condition (such as dementia), not being sufficiently fluent in the language of the country and not having an appropriate vocabulary in their own language (Muhammed 2017).

Lack of knowledge about dementia and services

Limited knowledge about dementia and available services may serve as a barrier to seeking help. This may be changing but not everywhere. In the UK, for example, people from Hindu, Muslim, Jain, Sikh and Christian religions, as well as a small number not associating themselves with a particular religion, have obtained higher score for knowledge about dementia than in earlier studies (Purandare 2007, Hailstone et al. 2017). This may indicate that knowledge about dementia has increased in the UK amongst some minority ethnic groups but this is not necessarily the case amongst all minority ethnic groups, especially in other countries where efforts to increase awareness in general and amongst minority ethnic groups have not been made or have not been as successful. Also, differences may have been due to other factors such as an increase in general levels of education or specific features of the sample.  Moreover, increased awareness about dementia needs to be accompanied by knowledge about the availability of services and this is something that is still lacking (Ahmed et al. 2017).

Health literacy

When trying to understand barriers to help seeking such as language difficulties and lack of knowledge, it is important to avoid ‘blaming’ people from minority ethnic groups and to realise that communication is a two-way thing. Healthcare organisations have a responsibility to provide accessible information and care, and do not always succeed in doing so. Although health literacy is commonly defined as “the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker 2000 in Brach et al. 2012, p.1), it is increasingly being acknowledged that healthcare organisations and the complexity of health care systems contribute towards health illiteracy. Brach et al. (2012) talk about ‘health literate healthcare organisations’ and emphasise their role in addressing health literacy as an essential part of providing person-centred care.[2] In the context of health literacy about dementia for people from minority ethnic groups, Ruud (2017, p. 230) suggests that in order

“to change people’s health seeking behaviour, it is imperative that information is given early, is perceived as relevant, is clear, is easy to understand, and applies to a person‘s life situation.”[3]

The ‘personal budget’ system, which operates in some European countries permits people to manage their own care and support and this can include paying relatives and friends to provide particular services. Whilst there has been some uptake of this option, language difficulties and poor health literacy skills may be obstacles. In the Netherlands, a whole network has evolved of people offering help to navigate through the system. In other countries, it is sometimes necessary to go through gate keepers in order to be entitled to some forms of support but people are not aware of this or of the existence of such support. A system which has the potential to promote autonomy and support a family-orientated approach to the provision of care will fail if it is too complex. Clearly, health and social care providers need to take measures to contribute towards health literacy, starting with simplifying their own systems of support and where necessary providing ‘the support to gain support’.

In connection with communication problems and lack of healthcare literacy, Levesque and colleagues (2013) have stressed the importance of ensuring that people from minority ethnic groups are able to recognise potential health needs and know how to seek and obtain appropriate services (Suurmond et al. 2016). They emphasise not only barriers to initial and subsequent health seeking but also the corresponding abilities that people need to have in order to overcome those barriers. 

Distrust of GPs and of the healthcare system

GPs are frequently consulted for a range of health issues and these consultations represent windows of opportunity to recognise and discuss problems or symptoms, provided that GPs are able to dedicate the necessary time for this. Practice nurses and community nurses may also have such an opportunity and having established a relationship of trust over time be able to detect signs of possible cognitive deterioration (Suurmond et al. 2016).

Unfortunately, distrust of GPs and the fear of racism may hinder help seeking within some minority ethnic communities (Shah 2007, APPGD 2013, Kenning et al. 2017). Even when people have contacted their GP (in the UK), they have not always been successful in obtaining a diagnosis from the memory assessment teams and some report feeling that they have been ‘fobbed off’ (Rauf 2011). In addition, some carers (African Caribbean and South Asian in the UK) have expressed the opinion that mental health services can only offer a diagnosis, not treatment, care or support and that consequently obtaining a diagnosis does not have great impact on people’s lives (Mukadam, Cooper, Basit and Livingston 2011). African Caribbeans and South Asians in another study have stated the opinion that the knowledge basis of GPs varies considerably and feel that this has led to initial misdiagnoses and delays in accessing specialist services (Jolley et al. 2009). Finally, in some minority ethnic communities, people may fear that, should they be diagnosed with dementia, their diagnosis would not be kept confidential by their GP (Mohammed 2017).

Members of the traveller communities in the UK are sometimes distrustful of GPs, fearing that consultations may lead to members of the family being institutionalised, forced to settle or separated from the rest of the family. This, combined with past experiences of culturally inappropriate services and contact with insensitive healthcare professionals, results in members of these communities often not seeking help or only in cases of crisis (Dementia Action Alliance 2018, Rattigan and Sweeney 2018). However, when they find a trusted GP or healthcare professional who respects their culture, some people from traveller communities will travel to consult them and consider taking up the offer of care and support (MECOPP 2012, DAA 2018, Rattigan and Sweeney 2018).

Transnational networks

Some people from some minority ethnic groups do not seek help, either in relation to diagnosis or to the use of services and support, because they rely on transnational networks of support. In Finland, for example, some older people from minority ethnic groups linked to the former Soviet Union and Estonia have very strong ties with their children who travel to Finland regularly to help with all kinds of tasks and maintain social ties across the border (Heikkinen and Lumme-Sandt 2013). Whilst people from these communities may be involved to some extent in the Finnish community, their focus of attention and emotional ties are predominantly with people outside of Finland. Some people from the former Soviet Union speak some Finnish, but in many cases it is ‘old Finnish’ and they can only understand basic everyday terms. Their knowledge of social services is weak and it is challenging for them to find available help (Voutilainen, Manninen and Vaarama 2003).

[1] For a lay explanation of statistical significance, please see: https://digest.bps.org.uk/2010/08/16/statistical-significance-explained-in-plain-english/

[2] For more information about health literate healthcare organisations and guidelines, please see article by Brach et al. (2012) at:  https://nam.edu/wp-content/uploads/2015/06/BPH_Ten_HLit_Attributes.pdf

[3] For a detailed discussion about health literacy and tailoring information on dementia for migrants and ethnic minorities, please see Chapter 8 in the report by Sagbakken and Kumar: https://www.fhi.no/globalassets/dokumenterfiler/rapporter/2017/sagbakken-kumar-dementia-ethnic-minorities-and-migrants-nakmi-rapport-2-2017.pdf

 

 


Key points

  • There are several possible reasons why people from minority ethnic groups do not seek help in relation to dementia (e.g. linked to language, poor health literacy and the way they perceive dementia).
  • Language barriers and lack of knowledge about dementia and the availability of services and support may result in some people from minority ethnic groups not realising that support is available and that they are entitled to it.
  • Even if aware of available support, some people from minority ethnic groups would not be able or know how to go about obtaining it.
  • Some people from minority ethnic groups are distrustful of health and social care professionals and of the healthcare system. They may, for example, have fears of being put into residential care, of being misdiagnosed, of lack of confidentiality, of health and social care professionals not respecting their culture or of being offered inferior care.

Recommendations

  • Health and social care professionals should have some awareness about perceptions of dementia and care which are common amongst people from particular minority ethnic groups (but not everyone in that group) and consider how this might influence the attitudes and readiness of the latter to seek help.
  • Health and social care professionals should try to normalise help-seeking and discuss possible symptoms of dementia in a factual way, albeit taking into consideration a person’s beliefs about the condition, as a means to reduce stigma associated with dementia and with seeking help. 
  • It should not be assumed that failure to seek initial help means that a person would not benefit from diagnosis or future support, or that people from minority ethnic groups “look after their own”.
  • Health and social care providers should consider how to reach out to ‘grass roots’ organisations and local cultural groups either as a means to reach members of minority ethnic group or in order to seek their advice on how to increase help seeking.
  • Policies should be developed to promote better coordination between GPs and other health and social care providers as well as a better system to share knowledge about available services and support.
  • It should be acknowledged that some people from minority ethnic groups lack trust in GPs and in the healthcare system. Efforts should be made to build up that trust. This might, in part, be addressed in awareness-raising campaigns about dementia for people from minority ethnic groups and involving people from minority ethnic groups in such campaigns.
  • People who find it difficult to seek medical advice/help in case of concerns, such as many people from minority ethnic groups, should have access to a free care navigator/coordinator/link worker. The existence of such a service should be well publicised, easy to access and free of charge.
  • Organisations providing health and social care should strive to promote health literacy and to ensure that their own practices and procedures are understandable and straightforward.
  • Health agencies could conduct outreach work to leaders in the local community to help create grassroots knowledge and use this to help promote a positive understanding and attitude about help seeking and possible support.
  • Support should be provided to people with dementia from minority ethnic groups to develop the abilities needed to seek initial help and to access possible future services. 

 

 
 

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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