Understanding patients’ and significant others’ preferences on starting a diagnostic trajectory for dementia: An integrative review

Figures & data

Table 1. Inclusion and exclusion criteria.

Inclusion	Exclusion
Written in English or Dutch	Written in languages other than English or Dutch
Studies reporting on preferences of people with memory complaints and their significant others regarding starting a diagnostic trajectory for dementia	Studies reporting on the development or cost/benefits of the tools (e.g. biomarkers) used to make an early/timely diagnosis
Studies reporting on patients’ or significant others’ views on (shared) decision making regarding starting a diagnostic trajectory for dementia	Studies reporting on whether a dementia diagnosis should be disclosed or not
Studies reporting on GP’s views on their patients/significant others’ preferences for starting a diagnostic trajectory or (shared) decision making	Studies reporting on general public or health care professionals’ preferences for diagnostic testing on dementia
Studies published after 2010	Studies reporting on preferences for dementia screening in healthy individuals

Note. GP = General Practitioner.

Table 2. Study designs, methods, findings, and themes related to patient preferences from included studies.

Authors (Year), Country	Study design	Timing of data collection	Participants (N = sample size), settings and information on diagnosis*	Aims	Themes (based on data synthesis)	MMAT
Birt, Poland, Charlesworth, Leung & Higgs (2020), United Kingdom	A qualitative design using individual interviews	After deciding on seeking help for memory complaints	N = 25 patients with dementia diagnosis N = 9 patients with MCI diagnosis N = 7 patients with subjective cognitive concerns	To understand the experiences of people who seek help for subjective cognitive concern and memory loss, including people not referred for further assessment.	Feeling of needing to do something Beliefs on the necessity of diagnostic testing Expected outcomes of the decision on diagnostic testing Perception of symptoms The support or wishes of the social network Interaction with HCP	80% of quality criteria met
Chrisp et al. (2012), United Kingdom	A qualitative design using a thematic analysis of case studies	After memory clinic visit	N = 20 SOs of PwMCs, information on diagnosis not provided	To identify influences on the decision to consult a HCP for symptoms of dementia.	Beliefs on the necessity of diagnostic testing Expected outcomes of the decision on diagnostic testing Perception of symptoms The support and wishes of the social network Interaction with HCP Health status of the PwMC	60% of quality criteria met
Koehn et al. (2016), Canada	A qualitative design using individual interviews	After receiving a diagnosis (pre-diagnostic experience maximum 4 years ago)	N = 29 people diagnosed with dementia, N = 34 SOs	To provide a comprehensive understanding of the challenges to securing a diagnosis of dementia, especially among ethnic minority groups.	Beliefs on the necessity of diagnostic testing Expected outcomes of the decision on diagnostic testing Perception of symptoms The support or wishes of the social network Interaction with HCP Societal factors	40% quality criteria met
Kunneman et al. (2017), The Netherlands	A qualitative design using focus groups complemented with surveys	After undergoing testing at a memory clinic	N = 10 people with a self-reported diagnosis (FTD, MCI, early AD or memory complaints) and their SOs N = 1 person who was told not be concerned, no dementia	To assess patients’ and caregivers’ views on and experiences with decisions about diagnostic testing for Alzheimer’s disease and receiving test results.	Feeling of needing to do something Beliefs on the necessity of diagnostic testing Expected outcomes of the decision on diagnostic testing Interaction with HCP Health status of the PwMC Societal factors The support or wishes of the social network	100% of quality criteria met
Lee et al. (2018), Singapore	A qualitative design using semi-structured interviews	After decision-making process on further assessment resulting from a positive screening result for cognitive impairment	N = 5 SOs of people with moderate to severe risk of cognitive impairment, information on further diagnosis not provided	To explore caregivers’ experience in decision-making regarding patients’ participation in further diagnostic assessment to confirm cognitive screening results for dementia.	Expected outcomes of the decision on diagnostic testing Perception of symptoms The support or wishes of the social network Health status of the PwMC Societal factors	60% of quality criteria met
Lohmeyer, Alpinar-Sencan & Schicktanz (2021), Germany	A qualitative design using individual interviews and focus groups	After undergoing testing at a memory clinic	N = 12 people with self-reported MCI or early dementia diagnosis, 32 SOs of people with (early) dementia	To explore caregivers’ experience in decision-making regarding patients’ participation in further diagnostic assessment to confirm cognitive screening results for dementia.	Feeling of needing to do something Expected outcomes of the decision on diagnostic testing Perception of symptoms Interaction with HCP Societal factors	80% of quality criteria met
Morgan et al. (2014), Canada	A qualitative longitudinal design using individual interviews	After the decision on testing Two timepoints: Day of the appointment at the memory clinic Six months after the memory clinic appointment	N = 46 SOs of PwMCs, 33 patients were diagnosed with AD, MCI, FTD or VCI, 5 patients had no cognitive impairment, 2 patients had inconclusive results after diagnostic testing	To explore rural family caregivers’ experiences in the period leading up to diagnostic assessment at a memory clinic, their hopes, and expectations of the assessment, and their experiences six months following the diagnosis.	Feeling of needing to do something Beliefs on the necessity of diagnostic testing Expected outcomes of the decision on diagnostic testing Perception of symptoms The support or wishes of the social network Interaction with HCP Health status of the PwMC	100% of quality criteria met
Mukadam et al. (2011), United Kingdom	A qualitative design using semi-structured interviews	After dementia diagnosis	N = 18 SOs of people with a dementia diagnosis	To explore the link between attitudes to help-seeking for dementia and the help-seeking pathway in minority ethnic carers.	Expected outcomes of the decision on diagnostic testing Perception of symptoms Interaction with HCP Health status of the PwMC Societal factors	100% of quality criteria met
Visser et al. (2019), The Netherlands	Observational study complemented with surveys	After undergoing testing at a memory clinic	N = 136 dyads (PwMC - SO) and N = 41 clinicians, N = 53 patients diagnosed with dementia N = 21 patients with an MCI diagnosis N = 34 patients had normal cognitive function after diagnostic testing N = 28 patients had another or unclear diagnosis	Describe the clinician-patient communication in the diagnostic process in memory clinics.	Interaction with HCP	100% of quality criteria met

Note. HCP = Health Care Professional, MCI = Mild Cognitive Impairment, AD = Alzheimer’s disease, FTD = Frontotemporal dementia, VCI = vascular cognitive impairment, no dementia, MMAT = Mixed Method Appraisal Tool, PwMC = Person with memory complaints, SO = Significant Other, * = diagnosis as reported by the authors in the original study.

Figure 1. Preferred reporting items for systematic reviews and meta-analyses (PRISMA) flow diagram.

Figure 2. Visual representation of identified themes Note. HCP = Health Care Professional, PwMC = Person with memory complaints.

Table 1. The full search strategy of electronic database PubMed.

Concepts	Search terms
#1 ‘timely diagnosis’ synonyms	Early diagnosis [Title/Abstract] OR timely diagnosis [Title/Abstract] OR timing [Title/Abstract]) OR diagnosis/adverse effects [MeSH:noexp] OR diagnosis/psychology [MeSH:noexp] OR early symptoms [Title/Abstract] OR diagnosis [Title/Abstract] OR diagnostic [Title/Abstract] OR diagnosing [Title/Abstract] OR early stage [Title/Abstract]
#2 ‘dementia’ synonyms	Dementia [MeSH:noexp) OR dementia/diagnosis [MeSH:noexp] OR dementia/psychology [MeSH:noexp] OR alzheimer disease [MeSH:noexp] OR alzheimer disease/diagnosis [MeSH:noexp]) OR alzheimer disease/psychology [MeSH:noexp] OR alzheimer disease [Title/Abstract] OR alzheimers Title/Abstract] OR dementia [Title/Abstract] OR mild cognitive impairment [Title/Abstract] OR "MCI [Title/Abstract] OR memory complaints [Title/Abstract]
#3 ‘preferences’ synonyms	Preference* [Title/Abstract] OR patient preferences [MeSH] OR patient*preferences [Title/Abstract] OR patient*view [Title/Abstract] OR views [Title/Abstract] OR value* [Title/Abstract] OR needs [Title/Abstract] OR experiences [Title/Abstract] OR opinions [Title/Abstract] OR considerations [Title/Abstract] OR perspectives [Title/Abstract] OR attitude"[MeSH:noexp]) OR "attitude/adverse effects [MeSH:noexp] OR attitude/psychology [MeSH:noexp] OR attitude [Title/Abstract] OR perceptions [Title/Abstract] OR beliefs [Title/Abstract] OR thoughts [Title/Abstract] OR motivations [Title/Abstract] OR motives [Title/Abstract] OR aim [Title/Abstract] OR desire [Title/Abstract] OR wishes [Title/Abstract] OR ideas [Title/Abstract] OR vision* [Title/Abstract] OR arguments [Title/Abstract] OR impression* [Title/Abstract] OR concerns [Title/Abstract] OR wants [Title/Abstract] OR requirements [Title/Abstract]) OR intention* [Title/Abstract] OR intention [MeSH]) OR expectation [Title/Abstract] OR liking [Title/Abstract] OR patient* participation [Title/Abstract] OR patient participation [MeSH] OR patient participation/’psychology [MeSH] OR point of view [Title/Abstract]) OR patient* perspective [Title/Abstract]) OR decision making [Title/Abstract]) OR choices [Title/Abstract]) OR discrete choice [Title/Abstract]) OR decision board [Title/Abstract] OR decision analysis [Title/Abstract] OR decision tool [Title/Abstract] OR decision aid [Title/Abstract] OR shared decision making [Title/Abstract] OR patient autonomy [Title/Abstract] OR patient-centred care [Title/Abstract] OR patient-centred care [MeSH] OR patient-centred [Title/Abstract] OR patient-centered [Title/Abstract] OR decision support [Title/Abstract] OR patient involvement [Title/Abstract] OR choice behavior [Title/Abstract]) OR decision [Title/Abstract]) OR choice behavior [MeSH] OR uncertainty [MeSH] OR uncertainty [Title/Abstract] OR decision making [MeSH]
#4 ‘population’ synonyms	Patient [Title/Abstract] OR patients [MeSH:noexp] OR caregiver [Title/Abstract] OR carer [Title/Abstract] OR spouse [Title/Abstract] OR significant other [Title/Abstract] OR spouse [MeSH] OR family [Title/Abstract] OR family [MeSH:noexp] OR general practitioners [MeSH] OR general practitioners [Title/Abstract] OR family physician [MeSH] OR family physician [Title/Abstract] OR primary care physician [MeSH] OR primary care physician [Title/Abstract]
Limiters	Results by year: from 2010 − 2020 Language: English AND Dutch
Combination of categories	#1 AND #2 AND #3 AND #4

Table 2. Themes, categories, and codes derived from data synthesis.

Themes	Categories	Codes	References
1.Views on starting a diagnostic trajectory	1.1. Feeling of needing to do something	Reduce uncertainty (P)	(Birt et al., 2020; Kunneman et al., 2017; Morgan et al., 2014)
		Do something for your health (P, SO)	(Lohmeyer et al., 2020; Morgan et al., 2014)
		Taking control of the situation (P)	(Lohmeyer et al., 2020; Morgan et al., 2014)
		Feeling that something is not right (P)	(Birt et al., 2020)
		Hope to be reassured (P, SO)	(Birt et al., 2020)
	1.2. Beliefs on the necessity of a diagnostic trajectory	Physical problems are more important than mental problems (P, SO)	(Lee et al., 2018)
		Involvement HCP is not needed (P)	(Chrisp et al., 2012; Koehn et al., 2016)
		HCP is unqualified to help (P)	(Koehn et al., 2016)
		Nothing can be done about it (P, SO)	(Lee et al., 2018; Lohmeyer et al., 2020)
		Fear of dementia (P)	(Birt et al., 2020; Chrisp et al., 2012)
		Helps in moving forward psychologically (SO)	(Morgan et al., 2014)
		Early diagnosis is helpful (P, SO)	(Kunneman et al., 2017)
		No harm in finding out (P)	(Kunneman et al., 2017)
	1.3. Expected outcomes of starting a diagnostic trajectory	Start effective (medical) treatment as soon as possible (SO)	(Kunneman et al., 2017; Lee et al., 2018; Lohmeyer et al., 2020; Morgan et al., 2014; Mukadam et al., 2011)
		Ease caregiver burden (SO)	(Lee et al., 2018; Lohmeyer et al., 2020; Morgan et al., 2014)
		Impulse to start living healthier (SO)	(Lohmeyer et al., 2020)
		Foot in the door for future therapy (SO)	(Lohmeyer et al., 2020)
		Access to support (SO)	(Morgan et al., 2014)
		Better access to specialist care (SO)	(Lohmeyer et al., 2020)
		Start advance planning (P, SO)	(Birt et al., 2020; Lohmeyer et al., 2020)
		Knowing what to expect (progression disease) (SO)	(Morgan et al., 2014)
		Live happy and content when still healthy (SO)	(Lee et al., 2018; Lohmeyer et al., 2020)
		Diagnostic trajectory will do harm to PwMC (SO)	(Chrisp et al., 2012; Lee et al., 2018; Mukadam et al., 2011)
		No improvement for future planning (P)	(Lohmeyer et al., 2020)
		Being placed in an institution as a consequence of diagnostic testing (SO)	(Koehn et al., 2016)
2. Normalization or validation of symptoms	2.1.Normalization of symptoms	Symptoms are due to normal aging (SO)	(Chrisp et al., 2012; Koehn et al., 2016; Mukadam et al., 2011)
		Symptoms are due to other illnesses (SO)	(Koehn et al., 2016; Mukadam et al., 2011)
		Symptoms not associated with a disease (SO)	(Koehn et al., 2016; Mukadam et al., 2011)
		Low perceived level of deterioration person with memory complaints (SO)	(Lee et al., 2018)
		Symptoms normalized by family members (SO)	(Chrisp et al., 2012; Lohmeyer et al., 2020)
	2.2. Conflicting interpretations of symptoms	Symptoms do not exist (P)	(Chrisp et al., 2012; Koehn et al., 2016; Lohmeyer et al., 2020; Mukadam et al., 2011)
	2.3. Symptoms perceived as unmanageable or abnormal	Symptoms are unmanageable or abnormal (SO)	(Koehn et al., 2016; Lee et al., 2018; Morgan et al., 2014; Mukadam et al., 2011)
		Alternative explanations for memory change no longer available (P)	(Birt et al., 2020)
		Comparison with previous functioning (SO)	(Lee et al., 2018)
	2.4.Validation of symptoms with social environment	Verification symptoms with social environment (P, SO)	(Birt et al., 2020; Koehn et al., 2016; Mukadam et al., 2011)
3. Support or wishes of the social network	3.1 Social support in seeking help	Limited social network person with memory complaints	(Chrisp et al., 2012; Koehn et al., 2016; Morgan et al., 2014)
		Social support in seeking help (P)	(Birt et al., 2020)
	3.2. Pursue diagnostic testing to accommodate wishes family	Pressure to pursue testing from family members (P)	(Birt et al., 2020; Kunneman, Smets, et al., 2017)
	3.3. Conflicting views on necessity of testing family members	Conflicting views on necessity of diagnostic testing	(Birt et al., 2020; Morgan et al., 2014)
4. Interaction with HCP	4.1.Dismissive reaction HCP to concerns	HCP normalizes symptoms	(Chrisp et al., 2012; Koehn et al., 2016; Mukadam et al., 2011)
		Doctor is dismissive	(Birt et al., 2020; Morgan et al., 2014)
		The doctor takes concerns seriously immediately	(Birt et al., 2020; Mukadam et al., 2011)
		HCP confirms necessity of testing	(Kunneman et al., 2017)
	4.2. Consequences of reaction HCP	Empowered by heightened concerns leads to concerns being taken seriously (P)	(Birt et al., 2020)
		Seeking second opinion	(Birt et al., 2020)
	4.3. (shared) decision-making	SDM is limited	(Kunneman et al., 2017; Visser et al., 2019)
		PwMC and SO ask clinician for advice on testing	(Visser et al., 2019)
		Judgement HCP dependent on perceived qualifications HCP (age, education)	(Birt et al., 2020)
		Ability of PwMC/SO to communicate about symptoms/needs	(Koehn et al., 2016)
		Trust in family doctor to follow advice	(Koehn et al., 2016)
5.Health status of PwMC	5.1. Personal characteristics	Mobility person with memory complaints	(Lee et al., 2018)
		Family history of dementia	(Kunneman et al., 2017)
	5.2. Medical characteristics	Need for medical intervention because of physical complaints	(Chrisp et al., 2012; Mukadam et al., 2011)
		Crisis	(Chrisp et al., 2012; Morgan et al., 2014)
		Presence of comorbidities provides distraction for SO’s, PwMC and HCP	(Chrisp et al., 2012; Koehn et al., 2016)
6. Societal factors	6.1 Stigmatization	Avoid stigma Fear of stigmatization	(Koehn et al., 2016; Mukadam et al., 2011)
		Self-stigmatization (avoiding social situations to avoid embarrassing situations) (P)	(Lohmeyer et al., 2020)
		Hard to seek help for mental problems	(Mukadam et al., 2011)
	6.2. Cultural beliefs	Outside help is intrusive, care is family responsibility (SO)	(Mukadam et al., 2011)
		Expectations of skills later in life (SO)	(Mukadam et al., 2011)
		Responsibility to take care of the elderly (SO)	(Lee et al., 2018)
		Family hierarchy (SO)	(Mukadam et al., 2011)
	6.3. Socio-economic status (social capital)	Knowledge on dementia	(Koehn et al., 2016)
		Language skills	(Koehn et al., 2016)
		Financial benefits	(Kunneman et al., 2017)

Note. PwMC = Person with Memory Complaints, HCP = Health Care Professional, P = code expressed by a person with memory complaints, SO = code expressed by a significant other.

Table 3. Quotes from participants in primary studies to illustrate the identified themes.

Theme 1: Views on starting a diagnostic trajectory
Categories	Quotes
Feeling of needing to do something	Well, a better understanding of exactly what it is, like what her condition is, like exactly what it is. I haven’t really been told from any doctor or anything, but we know there’s something about her memory, but I just don’t know what it is, I don’t know if it’s dementia. (daughter) Just to have a reason for his change. you have a person go from day to night, uh, just to know. what caused it would help. it doesn’t change the outcome at all but it just feels, it would be a help I think. (wife) (Morgan et al., 2014)
	Mrs. Weber: “I think that everyone should do something for his health or illness. No? And not simply sit it out and put the blame on other things.” (Lohmeyer et al., 2021)
Beliefs on the necessity of a diagnostic trajectory	“Things that are important to her–her corns, she has very painful corns that sometimes leads her to not being able to move, and sometimes I can’t even get an appointment at the polyclinics. And then it gets worse to walk. . . To her, these two things matter more than her mind. In her mind, she’s fine.” (Lee et al., 2018)
	“Mr. Schwarz: “To my mind, such a test is all very well. But when there are no possibilities for healing, one can say: ‘You can still stop the process. Then I don’t know if you would tell people without further ado. I’ve got my doubts there.” (Lohmeyer et al., 2021)
	“Sometimes it is better to know than not know. It was the same with my husband’s cancer. Like once you know, you can deal with it. And this will be the same way. It seems like nowadays things have to be labeled. And once there’s a label of Alzheimer’s for my mom, then we can go forth. (daughter)” (Morgan et al., 2014).
	C32: I just thought, there’s no harm in finding out.(Kunneman et al., 2017)
Expected outcomes of starting a diagnostic trajectory	I heard about a medication that can be taken to slow the process e not stop it e but it would slow the process so we were trying to get him in here. So I wanted [an assessment] to happen quicker. (wife) Well I’d like to think there’s a medication that would help her. It helps everything else. It certainly is not going to help her a year or two down the road, it’s not going to, it’s too late. I’m hopeful that maybe there will be yet. (husband) (Morgan et al., 2014)
	Because I know it will help us. . . It’s better than we just, we try to look after her blindly and not know what’s going on or what has gone wrong. It’s better that we know exactly. Because this test will actually zero in right, which area and where she needs help. So we, we in fact we are happy to have such thing you see. We don’t mind the inconvenience. Ultimately it will help her and it will help us as well. (Lee et al., 2018)
Theme 2: Normalization or validation of symptoms
Normalization of symptoms	“A year ago the carer spoke to her daughter about her concerns, however, her daughter felt she was being overly protective and saw no problems with her father, only what she felt was the natural progression of age” (Chrisp et al., 2012)
Conflicting interpretations of symptoms	“But as of this moment, she is still alright lah, not that serious lah. Occasionally, of course, when she talk, always repeating, still repeating, But other than that, like lunch, dinner or taking medicine, this kind of normal daily work, she still can manage lah.”(Lee et al., 2018)
	‘[T]his is the way of the world. . .. (laughs) There’s nothing special about this. (Koehn et al., 2016)
Symptoms perceived as unmanageable or abnormal	“One day he got quite aggressive . . . he was doing things that he’d never done before like was getting quite violent, he was throwing things . . . I said to the doctor ‘Look, you know, my mum can’t cope, I can’t cope and I’m afraid to leave my mum alone in the house’. . ..” (Mukadam et al., 2011)
Theme 3: The support or wishes of the social network
Social support in seeking help	“I was getting a little bit worried because I knew I was repeating things, but I wasn’t brave enough to take the first step myself so when my daughters asked if I would go to the doctor I said I would.” (Birt et al., 2020)
Pursue testing to accommodate family wishes	[Interviewer: did you also consider not being tested, perhaps because you really didn’t want to know?] P22: no, no. P21: I did. But my husband wanted to (.) I thought I’m actually fine, aren’t I? (Kunneman et al., 2017)
Conflicting views on the necessity of seeking help	I think it’s been happening for, well at least five years noticeably for myself, but its definitely been a process because my one sister has she’s seen it, but it’s taken her awhile to see it also, but my brother has just refused to deal with it on any level until just this last month. (daughter) (Morgan et al., 2014)
Theme 4: Interaction with HCPs
Dismissive reaction of HCP to concerns	‘the family doctor said ‘‘no’’ in the beginning, he did not think of it. He felt I might be too sensitive (Koehn et al., 2016)
Consequences of reaction of the HCP	I won’t be satisfied till I get that test done… best to get the tablets quickly, because when my husband took those tablets it made a lot of difference…done him more good. (Birt et al., 2020)
(shared) Decision-Making	“Our GP said (.) I would advise you to do it, you are a healthy guy and you can never be too early if there is something special on the market that will reduce the problems or get rid of them. I believe that we didn’t even have an initial appointment because the GP said that tests would need to be done” (Kunneman et al., 2017)
Theme 5: Health status of the PwMC
Personal characteristics	You know, getting in and out of the car, so as much as possible, even now she doesn’t want to go for her evening strolls in the wheel chair. She says it makes her giddy. So you can see that more movement is causing her to get this [giddy]. She gets like a vertigo attack, and she starts throwing up. So as much as possible I don’t want much change in her life. (Lee et al., 2018)
	P15: it runs in the family, and that is another reason why I decided relatively quickly to do something. (Kunneman et al., 2017)
Medical characteristics	“In January 2009 Hazel was supposed to pick up the carer after an event but she did not turn up. After several hours the police found her sitting in her car on the side of the road saying that she was lost. Though no medical reason for the incident was found [the carer] remained deeply concerned and in March she saw her mother’s GP and explained the situation” (Chrisp et al., 2012).
Theme 6: Societal factors
Stigmatization	“You know mental illness always has a stigma attached to it; it’s not like just saying that person’s just broken their leg . . . I think there’s that the residue of having to deal with institutions and outside agencies from a very, for something that’s for a mental illness.” (Mukadam et al., 2011)
Cultural beliefs	“You don’t want to bring in outside agencies unless you have to . . . because it’s intrusive . . . and when you can’t deal with it we’ll go to outside agencies who will help us deal with it. That’s where we’re coming from.” (Mukadam et al., 2011)
	Now my turn to take care of her. That time only, I got three daughters, Primary 5, Secondary 1 [and] Secondary 4. My mother still can walk a little bit. She helped me. I go work. She looked after my daughter. Since my mother like that, I have to take of my mother. (Lee et al., 2018)
Socioeconomic status	“Because he was actually fired on the spot, you need to apply for unemployment benefits, but I wanted it to be sickness benefits, because I thought: a new job is out of the question” (Kunneman et al., 2017)

Note. HCP = Health Care Professional, PwMC = Person with Memory Complaints.

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