CONSECUENCIAS DEL MALTRATO INFANTIL

This subtheme arose from participants‟ discussion of dementia as an unfamiliar illness in the community. They addressed how the visible signs and symptoms of this illness are understood by the South Asian community. Across all three groups a common view was that, unlike other illnesses (such as a broken leg or cancer) with physical symptoms, dementia is a mental illness which cannot be seen - an invisible illness (see the discussion chapter on how similarly views are shared by people in the white British population) - as illustrated in the quote below:

“I think the whole idea of, if there‟s an illness that‟s not visible, we find it very hard to deal with because we have to be shown to have… like cancer is visible, you know,

everyone knows about cancer now, or a broken arm – it‟s visible. But when you‟ve got depression and dementia, it‟s not visible”. (FG2 M1)

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This conversation further investigated how the community understands the visible signs and symptoms (such as the behavioural symptoms) of an invisible illness. The group suggested that individuals from South Asian community who lack appropriate understanding of dementia may perceive many visible symptoms of dementia as a normal part of the ageing process. Most participants explained that there is a common understanding in the South Asian Indian and Pakistani communities that dementia is related to ageing. This common knowledge asserts that people who have been diagnosed with dementia are older, vulnerable, and frail, similar to the general perception of ageing. This can be seen from the quotation below. The converse view is that people often associate growing old with memory difficulties, self-isolation, and becoming agitated and aggressive (mood swings):

“I thought, oh maybe it‟s something that‟s going to happen, it‟s normal. And I think because we didn‟t know it was dementia, we just kind of took it as part of old age, it‟s one of those things, it‟s just going to happen and she‟ll be fine after a while. But then once she

started progressing and getting worse, we thought right okay, I thought to myself this doesn‟t seem normal, because I could get her up and we‟d be like : come on we‟re going to go to the bathroom, and she‟d just start hitting me and she‟d start kicking off and I‟m thinking Gran, it‟s me”. (Family Member 2)

In the group discussions, participants were asked whether they thought dementia was a normal part of the ageing process. Everyone present was aware that dementia can happen to anyone at any age, making it distinct from normal ageing. Most participants suggested that they thought dementia is something which mostly occurs in older people, over the age of sixty. In the quotation below, one person made an association between dementia and getting old, suggesting that dementia is something one may experience when one grows old:

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“Well, I think you‟re more likely… there‟s probably a chance that, as you‟re older”

(FG3M3)

The participants‟ discussions indicated that it can be difficult to tell the difference between normal ageing and dementia, especially early-stage dementia:

“To be honest, I thought it was part [of] natural ageing a few years ago. I didn‟t think anything about it until.… I mean has done a lot of stuff around it” (FG1F1)

“It‟s a tricky situation that one because a normal person that‟s normal, that‟s got no dementia, nothing, could forget as well, so early stages you can‟t really catch it, it‟s quite difficult to catch.” (FG1M2)

Interviews with family members of people living with dementia and HCPs clearly indicated that the family members were unaware of dementia until the family member living with dementia was diagnosed. Prior to diagnosis, family members attributed the signs and symptoms of dementia to the normal course of ageing:

“I think other barriers are that they don‟t… people are not aware of what dementia actually is. They perceive some of the symptoms as part of getting old and don‟t perceive it as an illness necessarily”. (HCP 2)

“I think those were excuses at that time to deal with cultural problems that people didn‟t like. My experience… those issues come up with dementia and a lot of its symptoms which is problematic to their culture, the perception is that‟s its magic and spirituality and that

has an impacting. Same with post-natal depression – I‟ll give you an example – was perceived as spiritual possession…” (HCP7)

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Most of the HCPs interviewed in this study stated that this common perception of dementia in the South Asian community – that the symptoms are a normal part of ageing – occurs because the early symptoms of dementia in the Western medical model do not fit South Asian cultural norms of social harmony. One HCP gave an example of social isolation, explaining how this could be perceived as a social rather than a medical problem. The healthcare professionals in this study suggested that the common perception of ageing in the South Asian community is that age brings health problems and physical pain which result in a person socially disengaging with the community and the world. They also suggested that, as the condition and symptoms (especially behavioural symptoms) of dementia progress, this results in a perception that the person has been possessed by an evil power. This is the South Asian community‟s way of dealing with things which are not in line with or are problematic in their culture, as illustrated in the quote above. This will be discussed in detail in the next section.