Table 1.

Basic study information for each included paper.

Author/s	Year	Journal	Country	Aim of the study	Dementia type	Participants	Cultural group	Data collection	Data analysis
Robinson et al.	1997	Health Care in Later Life	Sweden	To describe the experience of early memory loss and the transition towards seeking professional help	‘Early symptoms of memory loss’	People with dementia	Not stated	Semi-structured interviews	Thematic
Keady	1999	Thesis	UK (Wales)	To explore the temporal process of coping within dementia, grounding any emerging insights in the experience of family caregivers themselves	‘Dementia’	Carersa	Not stated	Semi-structured interviews	Constant comparative method (Grounded Theory)
Brown and Alligood	2004	Journal of Applied Gerontology	USA	To explore patterns of help-seeking by older wife caregivers of husbands with dementia	Any	Carers (wives)	Caucasian	Unstructured interviews	Constant comparative method (Grounded Theory)
Krull	2005	Journal of Aging Studies	USA	To shed light on the process through which familial caregivers decide to seek out a formal diagnosis of Alzheimer’s disease in their loved ones	AD	Carers	White	Semi-structured interviews	Constant comparative method (Grounded Theory)
Leung et al.	2011	Health and Social Care in the Community	Canada	To explore the perceptions and experiences of problem recognition, and the process of obtaining a diagnosis among individuals with early stage dementia and their primary carers	Any	Both	Anglo-Canadian	Semi-structured interviews	Qualitative descriptive approach (Sandelowski, 2000)
Mukadam et al.	2011	International Psychogeriatrics	UK	To explore the effect of culture and ethnicity on beliefs and attitudes of carers to help-seeking for dementia symptoms and the impact of these beliefs on the pathway to diagnostic and therapeutic services	Any	Carers	Seven different ethnic groups	Semi-structured interviews	Thematic
Van Vliet et al.	2011	International Psychogeriatrics	Netherlands	To investigate the barriers to obtaining a dementia diagnosis for caregivers of people with EOD and to develop a typology of the diagnosis pathway	EOD	Carers	Not stated	Semi-structured interviews	Constant comparative method (Grounded Theory)
Koehn et al.	2012	Journal of Aging Studies	Canada	To understand the experiences of our participants as they negotiate the pathway to a diagnosis of dementia for themselves or a family member	ADRD	Both	Chinese-Canadian	Semi-structured interviews	Thematic
McCleary et al.	2013	Dementia	Canada	To explore and describe the experiences of South Asian Canadian persons with dementia and their family carers in the time prior to a diagnosis	Any	Both	South Asian Canadian	Semi-structured interviews	Qualitative description and content analysis

ADRD: Alzheimer’s disease and related disorders/dementias, AD: Alzheimer’s disease, EOD: early onset dementia.

^aKeady developed two separate models from his PhD work: a six-stage model based on carer interviews, and a nine-stage model based on data from people with dementia. We decided to include the six-stage model because it was based on a much greater amount of data.