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Raising awareness

Understanding dementia and help seeking


Raising awareness about dementia amongst minority ethnic communities

Communicating about dementia

To raise awareness about dementia, it is important that people hear and read about it, and understand what is being communicated. This is important for everyone but lack of fluency in the main language spoken in the country and poor literacy[1] may be significant barriers preventing many people from minority ethnic groups from accessing information about dementia (La Fontaine et al. 2007, Mukadam et al. 2011, Rattigan and Sweeney 2018). In some languages, there is no word for dementia. This is the case in many Asian languages including, for example, the Punjabi language (Lawrence et al. 2011, Mohammed 2017, Uppal and Bonas 2014, Sagbakken, Spilker and Ingebretsen 2018). Adamson (2001) found that most of the African/Caribbean UK carers[2] they interviewed were aware of a medical or lay term for dementia but there was considerable variation in what they considered dementia to be and in their understanding of symptoms and possible causes of dementia (see next section for more about how people from minority ethnic groups understand what dementia is). Some health and social care professionals prefer to use the term ‘dementia’ in combination with an explanation about what the term means even if the word does not exist in a particular language, also in the context of disclosure of the diagnosis, so as to raise awareness and contribute towards normalising dementia.

It is possible that the terms used by participants may also depend on their level of education or socio-economic status. There may also be differences depending on who is asked (i.e. the characteristics of participants in studies recording language use). The language in which the interview or discussion takes place, as well as the ethnic group to which the facilitator[3] belongs, might also affect the kind of language used.  Whilst considering the different terms for dementia in minority ethnic groups, it should be noted that in some countries, such as France and Finland, the term ‘dementia’ is now largely avoided by lay people and professionals. In France, for example, the term ‘maladie d’Alzheimer et les maladies apparentées’ (Alzheimer’s disease and related disorders) is often used and in Finland, ‘muistisairaus’ (memory disease) or ‘muistisairaudet’ (memory diseases).

Alzheimer Europe and the vast majority of its member associations use the term ‘dementia’ as well as specific terms reflecting different diseases and conditions which may result in dementia. It is generally agreed that dementia is a syndrome (a group of symptoms that typically occur together and for which there is no definitive diagnosis) that is caused by one or more diseases (Alzheimer’s disease being the most common). It can also be caused by frontotemporal degeneration, brain injury, infections and alcohol abuse but this is less common (Livingston et al. 2017).

In addition to finding the appropriate terminology and producing information in a language that members of minority ethnic groups understand, materials must be suited to the educational level of the target audience. As many older people from minority ethnic groups may have had little or no formal education (Berdai Chaouni and De Donder 2018), it is important to keep materials brief and to use simple sentence structures and vocabulary. In some minority ethnic groups, there is a greater likelihood of older people being illiterate in their own language, especially older women (Bhattacharyya and Benbow 2013, Nielsen and Jørgensen 2013).  For this reason, attempts to raise awareness about dementia should not be limited to printed materials but should also include DVDs and face-to-face communication. Szczepura (2005) emphasises the importance of using bilingual/bicultural staff, interpreters and link workers/advocates etc. to ensure equal access to healthcare for people from minority ethnic groups, including materials developed and tested for specific cultural, ethnic and linguistic groups and public awareness materials and campaigns in languages other than English and disseminated via ethnic media channels such as relevant television, radio, internet, newspapers and periodicals. Mukadam et al. (2015) emphasise the importance of presenting a personal story visually that people can relate to rather than purely clinical information.

How people perceive and make sense of dementia

The way that dementia is perceived and portrayed may affect the way that people with dementia are treated and how dementia is addressed within society. It may have an impact on care, social inclusion and respect for human rights. There may also be ethical implications, whereby certain ways of perceiving dementia might contribute towards promoting or condoning actions and attitudes that are harmful or beneficial to people living with dementia (Gerritsen, Oyebode and Gove 2018). Perceptions of dementia are not necessarily uniformly shared and there may be differences between and within different cultures. Members of some ethnic groups (or rather a considerable proportion of them) may have a common perception of dementia which differs to that held by the majority ethnic group. However, some members of majority ethnic groups may have similar perceptions of dementia. The aim of this section is not to suggest that the perceptions that people from minority ethnic groups have of dementia are right or wrong. Rather, the aim is to explore different perceptions and then in the next sub-section to reflect on the possible impact that such perceptions may have on seeking a diagnosis, care or support, especially when combined with other challenges that people from minority ethnic groups may face.

In this report, we focus on dementia (i.e. on the syndrome which can be caused by numerous neurodegenerative diseases and medical conditions) but many lay people from all ethnicities are unclear about the difference between dementia and the various underlying causes, the most common one being Alzheimer’s disease. In a series of focus groups conducted in Scotland, lay people were found to use the terms dementia and Alzheimer’s disease interchangeably (Devlin et al. 2007). However, in the Facing Dementia Survey, 19% of the 600 lay people interviewed associated dementia with being crazy or insane compared to just 4% for AD, suggesting that dementia and AD have different connotations in relation to mental illness[4] (Rimmer et al. 2005). This means that certain beliefs about dementia, which may interfere with help seeking and be more or less associated with stigma, might differ depending on the terminology used. This issue needs further exploration, especially in the light of recent developments resulting from changes in the way that medical researchers and some clinicians are now using the term ‘Alzheimer’s disease’. [5]

The perception of dementia as a medical condition is not described below because this is unlikely to represent an obstacle to seeking and receiving diagnosis, support and care in Europe. However, references to dementia being a ‘medical condition’ can be understood in the context of this report as reflecting the bio-psycho-social model of dementia, give or take some degree of emphasis on one or more particular aspects of this model.  The bio-psycho-social model of dementia, developed by Tom Kitwood, has been increasingly accepted by healthcare professionals in Europe since the 1990s. Kitwood claimed that the progression of dementia was not determined solely by changes in a person’s brain but rather by a complex interaction between five factors, namely the clinical manifestation of dementia, personality (in the sense of resources for action), biography, health, neurological impairment and social psychology.

Often, different terms are used for dementia within a particular cultural group, some from everyday language, some from the medical domain and these reveal different ways of understanding dementia. In the study about people with dementia of Moroccan descent living in Flanders, a range of everyday terms were used such as being “forgetful, crazy, possessed, spoiled ‘fsoesh’” or as having “a confused head” (Berdai Chaouni and De Donder 2018, p.8). Terms such as “Alzheimer”, “Zheimer” and “Dementia” reflected awareness of dementia as a medical condition but older people did not always want to hear such terms and some of the carers did not know if there was a word for dementia in Arabic. Not enough is known about perceptions of dementia as a medical condition amongst minority ethnic groups. It is not always clear, for example, whether people who perceive dementia as a medical condition focus on biomedical aspects (e.g. attributing all symptoms to changes in the brain, seeing medication as the sole solution and overlooking the importance of psycho-social support) or have a more holistic understanding similar to the bio-psycho-social approach described above. This is important in relation to help seeking and expectations with regard to care and support.

Understanding how people from different ethnic groups make sense of dementia is important when trying to raise awareness about dementia and ensure that people from different ethnic groups can benefit from timely diagnosis and access services, support, care and medication when needed and on an equal basis with other members of society. Successful awareness raising may sometimes involve providing information which respectfully challenges certain beliefs, whilst at the same time building on a group’s current understanding and respecting its traditions. An important step when trying to raise awareness about dementia in minority ethnic groups is to understand how people in those communities make sense of dementia. It is therefore essential to involve people from different ethnic groups in the development of such materials.

The following sub-sections, which explore different perceptions of dementia, have been organised into different categories for the sake of comparison. People do not necessarily fall into one of these neat categories. Different thoughts might cross people’s minds. They might fluctuate between different possible explanations or have a combination of beliefs, with some ambivalence and even conflicting views.

Dementia as part of normal ageing

There has been recognition of a strong association between cognitive decline and ageing for well over a thousand years. Berchtold and Cotman (1998) and Karenberg and Förstl (2006) point out that Pythagoras, Hippocrates, Plato and Aristotle seem to have considered cognitive decline as an inevitable part of ageing, and Aristotle and Galen may have considered old age and the last stage of life as a diseased state rather than natural (Berchtold and Cotman 1998). Cicero (ca. 150-200 AD), on the other hand, seems to have believed that “dotage” (“that foolishness which is associated with age”) was not inevitable but typically associated with “old men of trivial character, not to all old men” (Karenberg and Förstl 2006, p.7).

Evidence of the perception of dementia as part of normal ageing can still be found amongst members of many minority and majority ethnic groups in Europe, although perhaps more so amongst minority ethnic groups. The following list provides examples of some of the ethnic communities covered by recent studies.

  • Turkish and Pakistani communities in Denmark, compared to native Danish and Polish communities (Nielsen and Waldemar 2016),
  • Pakistani immigrants living in Norway (Næss and Moen 2015),
  • Female carers of immigrants with dementia in the Netherlands (van Wezel et al. 2016),
  • People with dementia of Moroccan origin in Flanders, Belgium (Berdai Chaouni and De Donder 2018),
  • Black, Asian and minority ethnic communities in the UK (La Fontaine et al. 2007, Purandare et al. 2007, Truswell 2018),
  • Greek Cypriot and African Caribbean carers in the UK (Botsford, Clarke and Gibb 2011),
  • African Caribbean and South Asian carers in the UK (Jolley et al. 2009),
  • People from East and Central European communities living in the UK, but not within the British Indian community (Parveen, Peltier and Oyebode 2017),
  • People from the traveller community in the UK (LeedsGATE 2015).

A recent study by Næss and Moen (2015) into the perspectives and experiences of Pakistani immigrants within the Norwegian welfare state provides considerable insight into the normalisation of dementia and the implications for care and support. The authors describe a process whereby members of the Pakistani community have an awareness of various types of mental disorders (see following sub-section) but consider certain symptoms of dementia as just signs of ageing and others not. The following quotes provide an example of this distinction.

“If a person throws stones on other decent people, or uses an iron bar to hit someone, then we think he is sick. But if he just talks nonsense or has lost his memory, we think it is probably because he is old. Then it’s OK and we have to take good care of them and act like usual”

“It’s only normal that old people become weird and difficult…” (Næss and Moen 2015, p.1722).

At some point (e.g. if symptoms become more difficult for the family to manage and to attribute to normal ageing of the body and mind), the family may consider seeking outside help but according to Næss and Moen (2015) the threshold for doing so is quite high because of the tradition of filial piety (discussed in more detail later in this section).

Dementia as a mental illness

Some people from minority ethnic groups consider dementia as a mental disorder (Mackenzie 2006, APPGD 2013, Mukadam et al. 2015, Mohammed 2017). This is also the case amongst many people within majority ethnic groups (Mackenzie 2006, Rimmer et al. 2005) but the impact on help seeking may be different. Despite recent changes in terminology resulting in dementia being referred to as a major neurocognitive disorder in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (Livingston et al. 2017), and although the term ‘dementia’ in not actually used in DSM-5 as a formal classification, the association between dementia and mental illness is maintained. In some countries, services and support for people with dementia are provided within the framework of mental health.

However, what is important is not whether dementia is, technically speaking, a mental disorder but that the term ‘mental disorder’ tends to have negative connotations and that people with mental disorders are highly stigmatised[6]. Mental disorders are often associated with negative emotions and discriminatory behaviour (Angermeyer and Matchinger 2004 and Thornicroft 2006). Alternative words such as mad, crazy, insane and nutty are frequently used. The same terms are sometimes used to specifically refer to people with dementia e.g. crazy or forgetful within some Middle-Eastern communities in Sweden (Antelius and Plejert 2016), mental, mad, crazy or ‘getting off your brain’ within some Black Caribbean communities in the UK (Lawrence et al 2011) and ‘bonkers’ also in the UK (APPGD 2013). The Chinese word for dementia has connotations of mental illness and stupidity (Loo 2014 in Truswell et al. 2015). Perceiving dementia as a mental illness (or even just as a medical condition) does not, as mentioned earlier, rule out beliefs about other possible causes.

Dementia as an “act of God” or caused by spirits

The belief that illness is caused by supernatural factors has been recorded in a number of studies involving people from a range of ethnic/cultural backgrounds, not just in minority ethnic groups (Landrine and Klonoff 1994). Studies which have focused on dementia suggest that in some cultural and ethnic groups, beliefs about fate, evil spirits, the evil eye, lack of faith in or punishment from God[7] are common (Elliot et al. 1996, Patel et al. 1998, Adamson 2001, Turner et al. 2005, Downs et al. 2006, MacKenzie 2006, APPGD 2013 and Mukadam et al. 2015). In the UK-based study by Parveen et al. (2017) involving people with dementia, carers and members of the community from British Indian, African and Caribbean, and Eastern and Central European minority groups, spiritual causes of dementia were not mentioned.  However, the first two groups emphasised the importance of religion and spirituality as ways to cope.

Spiritual beliefs about the cause of dementia have also been linked to black magic, demonic possession and menacing supernatural creatures (e.g. in the Black Caribbean and Pakistani communities in the UK - APPGD 2013). Mohammed (2017) explains that in Muslim societies, people often attribute mental illness and neurological disorders to ‘Jinn’ (or djinn), which can be found in Islamic folklore tales and in the Qur’an. Jinn are supernatural, menacing creatures which are believed to be able to harm people. He suggests that in some minority ethnic groups (e.g. with a link to the Indian sub-continent), people may have witnessed or heard about exorcisms and, not having a word for dementia or being familiar with this condition, may attribute the symptoms to demonic possession. However, whereas some researchers associate beliefs about evil spirits and curses with South Asian communities, Johl et al. (2016) point out that this is less common in Sikh and Hindu communities. This highlights the problem of grouping together very different cultural groups under one general title.

Dementia is not always understood as being either linked to spiritual forces or alternatively as being a medical condition. In some communities, dementia is recognised as a medical condition but nevertheless attributed to spiritual forces. In a qualitative study involving face-to-face interviews with South Asian carers of people with dementia living in the UK, it was found that they classed dementia as a mental illness but were sensitive to traditional religious and spiritual explanations concerning the cause of mental illness (Mackenzie 2006). This included the consequences of an on-going tension between good and evil and the possibility of being possessed by evil spirits. This is echoed by Regan (2016) who cites a fairly old study (by Brownfoot 1998) which reports a tendency amongst people from the Black Caribbean and Irish communities in one area of the UK to perceive dementia as a mental illness with supernatural causes.

Dementia has also been described as a punishment for not praying enough, not having sufficient faith to ward off evil spirits, as a punishment for something the person with dementia or his/family did in the past (Adamson 2001, Mackenzie 2006) and in terms of reincarnation and karmic retribution (APPGD 2013, Regan 2016). In a study by Nielsen and Waldemar (2016), some participants from the Pakistani and Turkish ethnic groups living in Denmark described their belief that a reduced lifespan of people with dementia was an act of Allah rather than a consequence of the underlying disease.

Dementia as a hereditary disorder

Many people, irrespective of their ethnic background, are concerned that they will develop dementia because they have a close relative with dementia, but the vast majority of cases of dementia are not inherited. For some dementias, there are inherited and non-inherited forms.  Only a tiny percentage of cases of Alzheimer’s dementia (AD) are inherited compared to 30 to 50 per cent for frontotemporal dementia (Alzheimer’s Society 2018).  In some minority ethnic groups, the fear that dementia can be inherited is perhaps greater because of fears that dementia could have a negative impact on the family unit in terms of stigma and marriage prospects of younger relatives in the case of arranged marriages[7] (Mohammed 2017). Such heightened concerns, when combined with a lack of understanding about dementia, may lead to assumptions that all forms of dementia are inherited.

Other perceived causes and precipitating factors

Within the context of perceiving dementia as a medical condition, some minority ethnic carers have described their beliefs about factors which may have led to the onset of the condition. Examples include major life events such as retirement or bereavement, other physical conditions, medication for other conditions, moving house and social isolation (Adamson 2001, Mukadam et al. 2015). It should be noted, however, that these beliefs, as well as those linked to normal ageing, are not radically different to those reported by members of majority ethnic groups (Adamson 2001).  

The belief that dementia is contagious has been found to be more common in some minority ethnic groups (Asian and Latinos in the United States and Asians in the UK) compared to their Caucasian counterparts (Ayalon and Aréan 2004, Purandare et al. 2007) but in one study 91.3% of South Asian American immigrants stated that AD dementia was not contagious (Lee, Lee and Diwan 2010).

A large-scale survey carried out by the UK Royal College of Psychiatrists found that only 4% of participants felt that people with AD (AD dementia) were responsible for their condition (Crisp 2005)[8]. However, in some minority ethnic groups, a person may be considered as being responsible for dementia because of social, physical and emotional factors or failure of the family to provide proper care and support (La Fontaine 2007) and in the US because of laziness and weakness of character (Low and Anstey 2009) and badfeng shui (Mahoney et al. 2005). In some minority ethnic groups, people who moved to Europe believe that dementia does not exist in their country of origin because everyone one lives together, the implication perhaps being that dementia is caused by loneliness and isolation (Antelius and Kiwi 2015).

Learning from other countries

In addition to literature about how people from minority ethnic groups make sense of dementia, there is a body of research into lay people’s perceptions of, emotional reactions to and knowledge about dementia in different countries in Europe. Examples include studies carried out in Turkey (Sahin et al. 2006), Greece (Tsolaki et al. 2009), France, Germany, Poland and Spain (Blendon et al. 2012), and Israel (Cohen, Werner and Azaiza 2009, Werner and Davidson 2004 and Werner, Goldstein and Buchbinder 2010). Such information could be helpful when developing culture-specific materials and Alzheimer Associations could share the materials they have with associations or groups trying to develop culturally appropriate materials for minority ethnic groups. The German and the Turkish Alzheimer Associations, for example, created a twinning project which ran from 2013 and 2017 and the Turkish Alzheimer Association participated in an event for the Turkish community in Augsburg organised by the German Alzheimer Association in 2018.   

Gaining access to minority ethnic groups

Successful awareness raising is also dependent on reaching people from the target communities, including the general public, people who may develop dementia or already have dementia, informal carers and key stakeholders in the community. The usual channels of communication (e.g. distribution of materials at stands, in chemist’s, community centres, GP surgeries, and in places and by people or organisations which correspond to the interests and practices of the main ethnic group), may have limited success.  Researchers and service providers are increasingly looking for appropriate ways to raise awareness within minority ethnic groups. As Rauf (2011) states, it is important to be proactive so as to avoid “hard to reach” becoming “easy to avoid”. The following are examples of various approaches used in the UK and the Netherlands:

  • holding roadshows in areas with a high population of people with a minority ethnic background, facilitated by people from the community and having the relevant language skills; specifically targeted at Indian, African and Caribbean, and East and Central European ethnic groups, including people with dementia, carers, relatives and members of the community (Parveen, Peltier and Oyebode 2017),
  • reaching out to people in community centres, places of worship, sheltered housing and day centres and through community radio stations such as Radio Ramadhan and Radio Haji in the Bradford area (Rauf 2011),
  • reaching out to family carers by ethnic bilingual professionals in community volunteer centres and starting co-creation processes with them (Smits et al 2018),
  • establishing trust before broaching the topic of dementia, achieved by making initial contacts and consulting relevant members of minority ethnic communities (e.g. by a researcher spending time talking to older Sikh men at Gurdwaras and in barber shops, waiting for them to ask her about her research and then talking about dementia) (Baghirathan 2018),
  • providing a dedicated Community Psychiatric Nurse to provide information about dementia to Punjabi-speaking Asian elders (Kaur et al. 2010).

Some researchers and services providers emphasise the importance of gaining the support and trust of influential people within the minority ethnic group such as spiritual leaders and people with respected roles in the community (Truswell 2018). This was echoed by Jaakson (2018) who found it essential to obtain the support of elders in order to gain access to and raise awareness about dementia within the traveller community in Finland. 

The provision of accessible information about dementia serves to raise awareness, help people to understand issues they or people they know may be experiencing and find out where and from whom to obtain further advice about possible diagnosis, available support, care and treatment. The provision of information does not, however, always lead to people from minority ethnic groups seeking further advice, a diagnosis and support.

[1] See also Support and Care- section on the uptake of services and support by minority ethnic groups .

[2] Here and elsewhere in this report, the term carer is used to refer to people who provide informal, unpaid care or support to a person with dementia (as opposed to professional carers who are paid and hopefully trained). Carers are usually relatives or close friends.

[3] The person conducting the interview or leading the discussion.

[4] See sub-section below on dementia as a mental illness.

[5] The studies mentioned in this paragraph were conducted at a time when the term Alzheimer’s disease (AD) was more or less synonymous with dementia. This has changed since the development of new conceptualisations of AD but these new conceptualisations are not yet widely understood by the general public. The issue here is therefore about the connotations and possible confusion surrounding the two terms.

[6] See also Support and Care- section on stigma.

[7] See sub-section below on "How different perceptions of dementia affect help seeking".

[8] See also Support and Care- section on stigma.


Key points

  • It is important when trying to raise awareness about dementia to understand how people from different ethnic groups make sense of dementia (i.e. whether it is perceived as part of normal ageing, a mental disorder, a hereditary condition, a test or punishment from God etc.)
  • In some languages there is no word for dementia. Sometimes, there are everyday/colloquial terms (e.g. linked to old age, forgetfulness and confusion) instead of or as well as medical terms. 
  • There is some degree of confusion amongst people from all ethnic groups about the difference between dementia (i.e. a syndrome) and Alzheimer’s disease (AD), as well as other conditions (which can cause dementia). Recent changes in the conceptualisation of AD may add to this confusion.
  • In some cultures, there is no concept of ‘carer’ in the sense of a person (usually a close relative) who provides care and support on a voluntary, unpaid basis. Providing such care and support is considered as natural or a basic responsibility of relatives.
  • Minority ethnic groups may be difficult to reach but this does not justify ignoring them.
  • Low levels of literacy, language difficulties and lack of trust need to be considered when developing communication materials and strategies.
  • Many people with dementia from minority ethnic groups have some difficulties with the language used by the majority ethnic group and some are illiterate in their own mother tongue.
  • People from the minority ethnic communities for whom communication methods and materials are being developed and implemented should be actively involved in that process.

Recommendations

  • Culturally appropriate channels and means of communication must be developed and used to reach people with dementia and carers from minority ethnic groups. This should include written materials but also face-to-face and audio-visual approaches.
  • Awareness raising materials targeted at specific minority ethnic communities should include images which reflect typical life in those communities (e.g. photos or images of environments, scenes and people) and use examples that people from those communities can relate to.
  • People from minority ethnic groups should be involved in the development of culturally appropriate materials and messages.
  • Collaboration between Alzheimer Associations should be considered when seeking to raise awareness about dementia amongst different minority ethnic groups, bearing in mind that local communities may have slightly different perceptions about dementia, different ways of talking about it and different cultural experiences.
  • Efforts should be made to build up trust within ethnic minority communities before and as part of a proactive awareness-raising campaign or initiative.
  • Awareness-raising materials should describe the typical progression of dementia and emphasise the potential benefit of support for various issues that might arise.
  • More research should be carried out into the perceptions held by people from minority ethnic groups about dementia, health and care.

 

 
 

Last Updated: Wednesday 10 April 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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