Table 1 Included papers
Study ID no. | Study | Country (urban/ rural) | Type (no.) participants | Experience/type of dementia | Ethnic group(s) | Data collection method/ dates | Method of analysis |
|---|---|---|---|---|---|---|---|
1 | Fox et al., 1999 [21] | USA (Urban) | Caregivers (10) | Caregivers of elders with diagnosis of dementia. No indication of type or severity | African American sub-sample from Levkoff et al. 1999 (below) | Interviews Dates not reported | Narrative review |
2 | Hicks & Lam, 1999 [22] | USA (Urban) | Caregivers (7) | Caregivers of elders with diagnosis of dementia. No indication of type or severity | Chinese American sub-sample from Levkoff et al. 1999 (below) | Interviews Dates not reported | Narrative review |
3 | Levkoff et al., 1999 [23] | USA (Urban) | Caregivers (40) | Caregivers of elders with diagnosis of dementia. No indication of type or severity | African American, Chinese American, Puerto Rican,Irish American | Interviews Dates not reported | Thematic analysis |
4 | Adamson, 2001 [24] | UK (Urban) | Caregivers (30) | Caregivers of persons with symptoms of dementia. No indication of type or severity | African/Caribbean, South Asian (Pakistan, India, East Africa) | Interviews Dates not reported | Constant comparative techniques of grounded theory |
5 | Karner & Hall, 2002 [25] | USA (Urban) | Service providers (42) | na | na | Interviews 1999 | Grounded theory |
6 | Bowes & Wilkinson, 2003 [26] | UK (Urban) | Patients /Caregivers (4)Service providers (11) | Patients with diagnosis of dementia and their families/caregivers. No indication of type or severity | South Asian | Interviews& case studies Dates not reported | Thematic analysis |
7 | Cloutterbuck & Mahoney, 2003 [27] | USA (Urban) | Caregivers (7) | Family caregivers of elders with dementia. No indication of type or severity. | African American | Focus group Dates not reported | Content analysis |
9 | St. John, 2004 [28] | UK (not specified) | Community members, carers and older people (no. not reported) Service providers and managers (no. not reported) | No details on experience of dementia. No indication of type or severity | nr | Interviews & focus groups 2002–4 | Content analysis categorised using a grounded theory approach |
10 | Beattie et al., 2005 [29] | UK (rural and urban) | Service managers & care staff (61) | na | na | Interviews 2000–2 | Comparative textual analysis |
11 | Neary & Mahoney, 2005 [30] | USA (not specified) | Caregivers (11) | Current or recent experience of caring for a relative with dementia. 6 people were being cared for at home, 3 had moved to nursing homes. No indication of type or severity. | Colombian, Puerto Rican, Argentinian, Guatemalan,Cuban, Dominican heritage. | Interviews Dates not reported | Ethnonursing data analysis |
13 | Jett, 2006 [31] | USA (Urban) | General population (14) | Participants ‘knew someone with dementia’ No indication of type or severity. | African American | Interviews Dates not reported | Ethnographic approach using Grounded theory |
14 | Jones et al., 2006 [32] | USA (Urban) | General population (62) | People with a range of knowledge and experience regarding Alzheimer’s Disease | Japanese American, Korean American, Chinese American | Focus groups 2001–2 | content analysis |
15 | Mackenzie, 2006 [33] | UK (Urban) | Caregivers (20) | Caregivers of relatives with dementia. No indication of type or severity. | Pakistani, Indian, Polish, Ukrainian | Interviews 2001–2 | Content analysis |
16 | La Fontaine et al., 2007 [34] | UK (not specified) | General public (49) | No details provided on experience or knowledge of dementia. | Indian | Focus groups 2001–3 | Thematic analysis |
17 | Vickrey et al., 2007 [35] | USA (Urban) | Caregivers (47) | Informal caregivers of people with dementia. Data on severity and duration of diagnosis for 44 participants 8 = mild, 18 = moderate, 18 = severe | African American, Chinese American, Euro American, Hispanic American | Focus groups 1998–9 | Content analysis |
18 | Lawrence et al., 2008 [36] | UK (Urban) | Caregivers (32) | Carers of people with dementia. No indication of type or severity. | Black Caribbean, South Asian, White British | Interviews Dates not reported | Grounded theory |
19 | Morhardt et al., 2010 [37] | USA (Urban) | Caregivers (48) | Carers of people with “Alzheimer’s Disease and related dementias” No indication of type or severity. | Assyrian, Arab, Bosnian, Hindi,Urdu (language speakers) | Interviews & observations 2005–8 | Grounded theory |
20 | Boughtwood et al., 2011 [38] | Australia (not specified) | Multicultural community link workers (24) | Extensive experience of and in-depth knowledge of family care-giving for dementia. | na | Interviews Dates not reported | Thematic analysis |
21 | Lawrence et al., 2011 [39] | UK (Urban) | Older people with dementia (30) | Dementia severity: MMSE < 11 n = 8 (severe) MMSE 11–20 n = 9 (moderate) MMSE >20 n = 13 (mild) | Black Caribbean, South Asian, White British older people | Interviews Dates not reported | Grounded theory |
22 | Mukadam et al., 2011 [40] | UK (Urban) | Caregivers (18) | “caring for people at different stages of dementia” no further details reported | White British, South Asian, Black (African or Caribbean), White Irish, White Other, Asian Other, Chinese | Interviews Dates not reported | Thematic analysis |
23 | Koehn et al., 2012 [41] | Canada (not specified) | Caregivers (11) and people with dementia (10) dyads | Patients with “probable ADRD”. Diagnoses made 1–4 years prior to interview | Chinese-Canadian | Interviews 2008 | Critical-constructionist approach |
24 | Shanley et al., 2012 [42] | Australia (Urban) | Caregivers (121)Multicultural health workers (60) | Family carers with recent experience of caring for a family member with dementia. No indication of type or severity | Arabic, Chinese, Italian, Spanish (language speakers) | Focus groups (carers) & interviews (health workers) Dates not reported | Thematic analysis |
25 | Boughtwood et al., 2013 [43] | Australia (not specified) | Multicultural workers (24) | Employed to promote access to dementia services in CALD communities. | na | Interviews Dates not reported | Content and thematic analyses |
26 | Haralambous et al., 2014 [44] | Australia (not specified) | Caregivers (13)Community workers (11)Health professionals (39) | Carers of people with dementia. No indication of type or severity | Chinese, Vietnamese | Interviews & focus groups Dates not reported | Thematic analysis. |
27 | Uppal et al., 2014 [45] | UK (not specified) | General public (28) | No information provided if caregivers or not. No indication of type or severity | Sikh | Focus groups Dates not reported | Constant comparative methodology |
28 | Casado et al., 2015 [46] | USA (Urban) | Caregivers 23 | Care-givers of people with dementia symptoms. No indication of type or severity | Korean American | Focus groups Dates not reported | Thematic analysis |
29 | Jutlla, 2015 [47] | UK (Urban) | Carers (12) | Carers of a family member with dementia. No indication of type or severity | Sikh | Interviews Dates not reported | Constructivist grounded theory |
30 | Mukadam et al., 2015 [48] | UK (Urban) | General public (53) | People without a known diagnosis of dementia, with or without experience of caring for people with dementia | South Asian | Focus groups & interviews Dates not reported | Interpretative phenomenological analysis |