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The perception of those who are perceived and portrayed

2013: The ethical issues linked to the perceptions and portrayal of dementia and people with dementia

So far, we have examined the different ways that dementia is perceived and portrayed by different groups within society, including people with dementia themselves. Before concluding, we briefly consider the importance of the perceptions of people with dementia, how and what they are telling us about dementia and some of their reactions to the way that dementia is perceived and portrayed in society.

Why the perspective of people with dementia is important

The literature abounds with descriptions of the symptoms and progression of dementia, the impact of dementia on carers and issues related to the current and future provision and financing of dementia care. The focus is often on the challenge that dementia poses in medical, economic and social terms. In addition, dementia is typically perceived and portrayed as involving losses and evoking fear. The perspectives of people with dementia provide an inside account of dementia which is much richer than that typically portrayed by people who do not have it. People with dementia can tell others, who may one day have dementia, what it is like and what they need. This may influence how dementia is subsequently portrayed and help ensure the provision of appropriate and good quality care, support and treatment. In this context, Goldsmith commented,

“It is necessary first to first accept that people with dementia have a voice that is worth listening to, second to facilitate the use of it and third to hear it.” (Goldsmith, 1996, ix)

How people with dementia are influencing how it is perceived and portrayed

In the last few decades a number of people with dementia have written about their experience of having dementia (Boden, 1998 and 2005; DeBaggio, 2002; Davis, 1989; McGowin, 1993). Several have spoken about their experience of dementia at local, European and international dementia conferences. Recent examples include Peter Ashley, James McKillop, Helga Rohra and Nina Balackova. In addition to peer support groups for people with dementia, some groups of people with dementia (such as the Scottish Dementia Working Group, Dementia Advocacy and Support Network International (DASNI) and the European Working Group of People with Dementia) actively seek to communicate their experience and perceptions of dementia to wider society. In participating in research, especially qualitative research, people with dementia enable others to gain insight into their experience. Yet others have shared their experience and perception of dementia with healthcare professionals, service providers, school children and students, and in some cases, helped shape national dementia policy.

Early studies into the experience of dementia relied heavily on the interpretations and observations of relatives and carers. Cotrell and Schulz (1993) were particularly critical of this, stating that such studies reduced people with AD to “an entity to be studied rather than someone who can directly contribute to an understanding of the illness and its course” (Cotrell and Schulz, 1993, cited in Keady, 1996, p.277). Fortunately, this is less common nowadays although relatives and carers are still sometimes consulted on issues of relevance to people with more advanced dementia, even though researchers are encouraged to adopt approaches to maximise the potential of people with dementia to participate.

What people with dementia are telling us about the experience of dementia

Some of the earlier personal accounts of dementia portrayed dementia as a fairly painful experience and as involving a struggle against cognitive decline. This was in keeping with the way that dementia was generally perceived. It may also have been influenced by a comparatively lower level of care and support, and fewer treatment options. However, people with dementia are increasingly portraying a more nuanced and to some extent more positive outlook on dementia.

Dementia is not universally considered as a devastating disease and some people in the early stages are even quite indifferent towards it (Steeman et al., 2007). A small-scale qualitative study of eight older people with dementia found that the descriptions of the experience of dementia ranged from “not a big deal” to “hellish” (Hulko, 2009). One person described it as a nuisance whereas another stated,

“You can fight it or try to overcome it or step around it, but it’s there and it’s not as if you can say that what a nuisance, I’ll push it aside and carry on uh, my regular, no you can’t. It’s just a. It is a different way of life. And you can roll with it or I suppose you could go and hibernate, uh tuck yourself away, but yes, it does make a difference.”(Hulko, 2009, p. 7)

In contrast to the above perspective, one person with dementia described AD as something that was not constantly on his/her mind and the tendency to just carry on.

“I don’t think every day, ‘oh gosh, I have got Alzheimer’s or something like that, I just carry on.”(Alzheimer’s Society, 2008, p. 52)

The first of the above quotes is full of symbolism of fighting, stepping around or pushing aside an obstacle, sleeping through the experience or withdrawing from it. One person with dementia described the experience of other people with dementia as like living in a fog. Another person in the same study (Hulko, 2009) described the progression of dementia in terms of a journey across unknown territory, with the knowledge that the ground was becoming a slippery slope which might turn out to be steep or gradual. This shows how people can use metaphors to convey in symbolic form an experience, an emotional reaction and an approach towards living with dementia (e.g. to avoid or ignore it, to wait and see but to tread carefully due to the unknown nature of what lies ahead etc.). Although metaphors can sometimes be damaging when over-used, people with dementia sometimes find metaphors a helpful means to communicate their experience to others.

Whilst people with dementia often do not start from the assumption that dementia is “a problem”, many contemplate future changes and the progression of the condition. This may lead to worry but at the same time to the opportunity to make plans based on possible future scenarios. Some people with dementia, whilst not perceiving dementia as a problem, think that it may well be a problem for their families (MacQuarrie, 2005).

“No, I don’t have any trouble with my memory. I don’t have any trouble with my memory! People, other people might have trouble with my memory, but I don’t have any trouble… As far as I am concerned, Alzheimer’s is not bothering me at all.”(MacQuarrie, 2005)

Contrary to the common perception that people with dementia have no quality of life, people with dementia do not tend to rate their quality of life as poor. Of 88 people with mild to moderate dementia, 67% reported having a good quality of life and this was in part linked to having a sense of being useful (Cahill et al., 2004). However, Droës et al. (2006) point out that being of use was not mentioned by carers as being relevant to quality of life and Gerritsen et al. (2007) found that professional carers only focused on it to a minor degree. The importance of feeling useful and being able to give something back also runs counter to the common perception of people with dementia being unable or unwilling to reciprocate, which was one of the frames identified by van Gorp et al. (2012) and one of the themes which emerged from a study into GPs’ perceptions of dementia (Gove, 2012). In her opening address to the members of the European Working Group of People with Dementia (EWGPWD), Helga Rohra highlighted the importance of reciprocity, stating that “people with dementia want to give something to the people around them, not only to take”. Subsequent discussions within the group revealed the shared perception that having dementia did not take away the ability to contribute towards society and that the ability to do so was important for self-esteem and quality of life. Whilst not suggesting that dementia is a wholly positive experience, members of the EWGPWD emphasise that they still have a place and a role to play in society and wish to focus on maximising their remaining capacities and on what is positive in their lives, and that this calls for appropriate services and support, as well as a timely diagnosis, to maximise the potential of people with dementia to lead fulfilling lives.

Do we really hear what people with dementia are telling us?

More and more people with dementia are stepping out of their comfort zones, standing up in public and speaking about their personal experience in front of hundreds if not thousands of strangers. It is important to listen to them and hear what they are telling us. Sometimes, people listen but misinterpret what was said as it does not correspond to their perception of dementia. For example, statements made by people with dementia (e.g. to the effect that they don’t have a problem with memory as in the above quote) may be interpreted as involving denial (deBoer et al., 2007). Whilst denial may occur and some people with dementia may lack insight, what people with dementia say is interpreted in the light of our perceptions and assumptions about dementia which may sometimes be inaccurate, biased and misguided.

A discrepancy between what a person with dementia says or does and people’s expectations of what is “normal” or “usual” for people with dementia may even result in people concluding that a person must not have dementia. Nina Balackova, who has dementia, explained at a recent conference that her ability to recite accurately all the names of the presidents of the United States of America (a task which took weeks of practice) led to a specialist declaring that she must not have dementia. Yet achievements based on remaining capacities, as well as on effort and practice, and the loss of certain capacities, differ from one person to the next. Daphne Wallace (2013), who has dementia, points out that the losses which might occur as a result of dementia are subjective and dependent on what the person concerned considers important and normal for him/her. If we listen to people with dementia but only hear what fits comfortably in with our existing understanding of dementia, we will not gain more insight into this condition.

Finally, it must be borne in mind that the perceptions of dementia held by some groups within the overall population with dementia are not equally heard and in some cases not heard at all (Hulko, 2004 and Phinney, 2008 in Alzheimer Europe, 2011). Whilst people have multiple identities, the perspectives of some groups of people with dementia, such as those who are lesbian, gay, bisexual or transgender (LGBT), have Down’s syndrome or are homeless, in prison, travellers or physically disabled, are notably absent and the perspectives of others, such as those who are, for example, middle-class, well-educated and in the earlier stages of dementia are more present.

Reactions of people with dementia to the way that dementia is perceived and portrayed

Some people with dementia (such as Peter Ashley, James McKillop and Bryden to name but a few), who have spoken at dementia conferences, have objected to the way that dementia and people with dementia are perceived and portrayed (e.g. as empty shells, people with no mind as the term “demented” implies, people who are suffering and people who are dying from dementia).

People with dementia have also challenged the perception and portrayal of dementia as a stigma. Terry Pratchett, for example, a well-known British fiction writer, recently diagnosed with a rare form of dementia, expressed his view that dementia is not a disease of the bumbling elderly and claimed that people with dementia are stigmatised as “superfluous old farts” (Alzheimer Europe, September 2008).  Mr Jan Henry Olsen (a former Norwegian fisheries minister who has dementia) stated at a dementia conference in Olso that he sometimes feels like a criminal even though he knows he has committed no crime. He used the term “taboo” to describe how people sometimes react towards him and his wife since he has been diagnosed with dementia. He described his experience of misguided health professionals trying to “keep it (the diagnosis) quiet” but also how this had motivated him to challenge such stigmatization (Alzheimer Europe, DIE Magazine, June 2008).

The portrayal of dementia in the UK awareness raising campaign as a condition which results in people gradually fading away, as well as to a song about dementia including the words “No one and nothing can bring you back to me”, aroused strong objections from some of the members of the EWGPWD. In relation to the television campaign, Daphne Wallace commented, “As I said in a large meeting earlier this year, I have yet to find anyone with dementia who likes this advert and many friends, even with little knowledge of dementia are also critical of it.” Helga Rohra, commenting on the song, was outraged that people with dementia could be portrayed in what she considered to be a misleading way and as “inanimate objects”.

Whilst some forms of communication can be described as strategic (see separate section on this topic), the way that dementia is portrayed is often based on good intentions but sometimes accompanied by a lack of information or suitable reflection. It is therefore important that people with dementia continue to provide feedback about their experience of dementia and of the way that it is portrayed in order to ensure that dementia is perceived and portrayed in a balanced way, thus avoiding “doom and gloom” scenarios or looking at dementia through rose-coloured spectacles.



Last Updated: Monday 24 February 2014


  • Acknowledgements

    The above information was published in the 2013 Report "The ethical issues linked to the perceptions and portrayal of dementia and people with dementia" as part of Alzheimer Europe's 2013 Work Plan which received funding from the European Union in the framework of the Health Programme. Alzheimer Europe gratefully acknowledges the support it has received from Fondation Médéric Alzheimer Europe for the development and publication of this report.
  • European Union
  • Fondation Médéric Alzheimer