Table 3.

Key concepts and second- and third-order interpretations.

Concepts		Second-order interpretations	Third-order interpretations
Changes experienced	Changes in family member	- Changes include memory, cognition, loss of abilities, behaviour and personality	People with dementia do not notice, or at least do not admit to, the personality/relationship changesa
	Contextual factors	- Noticing as process and realisation through retrospect - Changes manifest in family relationships and work contexts - Rate of decline affects how changes are perceived	- Social manifestations such as relationship and work tensions sometimes act as the sign that something is not right rather than the symptoms themselves - When a new situation (sign, event, change, etc.) occurs, it is evaluated by the person who notices in the context of changes they may have previously noticed. In this way, past events help to shape the evaluation of the current event, and, at the same time, past events are re-evaluated in light of the new events; thus some signs are only ‘noticed’ in retrospect.
Delaying factors	Discounting, misattributing and deferring	- Attributed to: Normal aging, concurrent health issues, emotional trauma or stress, person with dementia feigning the problem, malicious and intentional behaviour, or noticed change but did not attribute to anything - Although normalised, the event is not discounted completely and will influence the interpretation of future events - Ambivalence exists about the cause of the changes	There are three possible responses to the signs of dementia: 1 – Discounting – as either normal aging (‘that happens when you get older’), normal as compared to others (‘we all do that’), or normal compared to the person with dementia’s usual self (‘She’s always been like that’) 2 – Deferring – no immediate judgement is made and the information is ‘shelved’ until the person can evaluate it 3 – Misattributing – there is thought to be another cause for the changes, for example high blood pressure or stress at work
	Interpersonal issues	- Person with dementia’s denial and refusal to seek help - Person with dementia’s covering up leads to lack of understanding and confirmation from the social context - Carers worried about upsetting or betraying the person with dementia - Caregivers can minimise the problems as a means of coping - Family duty to care – therefore help not needed - Respect family hierarchy - Concerns about the stigma of mental illness	The person with dementia’s reluctance to accept a problem and seek help causes a moral dilemma for the significant other who may feel that seeking medical help or consulting lay networks would be a betrayal of the person with dementia’s confidence.
	Delays due to different cultural explanations	- Aging is considered normal in the context of American culture and Chinese culture - Cultural expectations can influence whether or not a problem is recognised – e.g. the expectation that a woman’s household duties cede to her daughter in law. Therefore the loss of abilities was not picked up. - attributed to religious causes	Different cultural norms and values influence the ways in which experiences are defined (e.g. as a normal part of aging), as well as the expected responses to these experiences (e.g. the family duty to care).
	Delays connected with the services	- Delays because doctor is trusted to identify the problem - Lack of trust or information in the health care system - Importance of system and resource accessibility
Advancing factors	Active reflection and seeking further evidence	- Symptom appraisal – development of hypotheses about the cause of the observed symptoms - Observations of others - Increased surveillance - Person with dementia’s strategies gradually failing, they become more reflective about their actions and abilities and compare to themselves and others - Reflecting on future needs - Accumulation of problems leads to recognition - No longer able to normalise	People with dementia and their families try to make sense of their experiences by observing, comparing and reflecting. As new experiences occur, the whole situation is redefined and new hypotheses developed about the cause of the changes. As problems accumulate, as long as they are reflected upon, the closer the hypothesis will be to dementia as the cause
	Exposure to information or past experience	- Past experience of dementia with another family member - Professional knowledge - Exposure to information about dementia	Past experience and knowledge of dementia add to the resources with which people make sense of what is happening
	Pivotal event	- Something happens that forces them to acknowledge a problem. It can no longer be discounted, misattributed or deferred. This is usually a crisis or safety concern. - Dementia recognised when seeking help for another problem - Carer’s patience finally snaps and they confront the person with dementia	A pivotal event causes the recognition of a need to seek medical help, or at least a sudden advancement along the trajectory to diagnosis At the time of this recognition the person may not have hypothesised dementia, or they may have hypothesised it some time ago

^aKoehn et al. introduced this concept but the other papers are in support of it when taken together – see Table 2.