Pathways to dementia diagnosis among South Asian Canadians

Abstract

Urban centers are increasingly ethnically diverse. However, some visible minorities are less likely than their majority counterparts to seek and receive services and treatment for dementia. This study explored experiences of South Asian Canadians, Canada's largest visible minority group, prior to dementia diagnosis. Six persons with dementia and eight of their family carers described their early perceptions of dementia-related changes, actions taken, including help seeking and diagnosis, and affective responses. Early signs were attributed to aging or personality. Even after cognitive enhancers were prescribed, some respondents continued to believe that the dementia symptoms were 'normal'. Family carers' affective responses may be related to their attributions. Before seeking medical attention, family carers modified physical or social environments because of symptoms. Help seeking was delayed up to four years, even with significant dementia symptoms. Recognition of a health problem was influenced by safety concerns, emergence of new symptoms following trauma, and treatment for other health problems. For some, relatives living outside the home or outside Canada were instrumental in recognizing a problem and convincing family carers and persons with dementia to seek medical attention. The pathway to diagnosis might be easier with outreach to help South Asian immigrants differentiate between normal aging and dementia. Symptom recognition by physicians treating other acute conditions was a portal to dementia services for others. Screening and referral in acute care could result in earlier diagnosis and treatment.

Delayed help seeking behavior in dementia care: preliminary findings from the Clinical Pathway for Alzheimer's Disease in China (CPAD) study

“…This may partially be explained by the insidious presentations of dementia, since the gradual nature of the cognitive decline might be unrecognized by the family members living with them (Salloway and Correia, 2009;Dai et al, 2015). About 76.6% of Chinese had personal fear of AD (Zeng et al, 2015), but cognitive decline is commonly perceived as due to senility and normal aging (McCleary et al, 2013;Zeng et al, 2015). About 76.6% of Chinese had personal fear of AD (Zeng et al, 2015), but cognitive decline is commonly perceived as due to senility and normal aging (McCleary et al, 2013;Zeng et al, 2015).…”

South Asian older adults with memory impairment: improving assessment and access to dementia care

“…This is consistent with the findings of Mukadam et al (2011aMukadam et al ( , 2011b for ME groups in general regarding dementia. It is interesting to note, however, that the majority of the literature focusing on South Asian OA specifically has accumulated in the UK, with only two studies having been conducted in (Acharya and Northcott, 2007;McCleary et al, 2013) and one in the USA (Morhardt et al, 2010). However, as previously noted, South Asians represent a large proportion of ME groups in Anglo-American countries (Tran et al, 2005;ABS, 2006;ONS, 2011a;USCB, 2012).…”

“…Similarly, feelings of depression were ascribed to old age itself and to social problems (Lawrence et al, 2006a). In one case described by McCleary et al (2013), the associated behavioural changes were perceived as intentional by the spouse. Given this understanding of the terminology of dementia and its associated symptoms, the causes were variously ascribed ranging from religion to medication side-effects and in some cases to traveling abroad (Bowes and Wilkinson, 2003).…”

Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia

“…It is known from qualitative research involving those at the onset of their condition (Robinson, Ekman, Meleis, Winblad, & Wahlund, 1997;Steeman, de Casterlé, Godderis, & Grypdonck, 2006;Alzheimer's Society, 2010a,b;McCleary et al, 2013), influential reports (All-Party Parliamentary Group, 2012) and from the autobiographies written by people living with dementia (for a review see: Page & Keady, 2010), that the first subtle signs of onset are often difficult for the person to understand and translate into their everyday frames of reference and meaning-making. As an illustration, at the end of the 1980s in the first book written by a person with dementia, the Reverend Robert Davis described his initial encounter with (undiagnosed) dementia as follows: 'Deep within me I knew that something was terribly wrong with my mental processes' (Davis, 1989 p.49).…”