Pathways to diagnosis: exploring the experiences of problem recognition and

obtaining a dementia diagnosis among Anglo-Canadians

Karen K. Leung BA (Hons)1, Juli Finlay MA

2, James L. Silvius MD FRCPC3, Sharon Koehn PhD

4,

Lynn McCleary RN PhD5, Carole A. Cohen MD FRCPC

6, Susan Hum MSc7, Linda Garcia PhD CASLPO (Reg.)

8,

William Dalziel MD FRCPC3, Victor F. Emerson PhD

9, Nicholas J.G. Pimlott PhD MD CCFP10, Malini Persaud RN

PhD11, Jean Kozak PhD

12 and Neil Drummond PhD13

1Department of Family Medicine, University of Calgary, Calgary, Canada, 2Department of Anthropology, University of

Calgary, Calgary, Canada, 3Department of Medicine, University of Calgary, Calgary, Canada, 4Center for Healthy Aging

at Providence, Vancouver, Canada, 5Department of Nursing, Brock University, St. Catharines, Canada, 6Department of

Psychiatry, University of Toronto, Toronto, Canada, 7Family Practice Health Centre, Women’s College Hospital, Toronto,

Canada, 8Interdisciplinary School of Health Sciences, University of Ottawa, Ottawa, Canada, 9Acuity Research Group,

Inc., Ottawa, Canada, 10Department of Family and Community Medicine, University of Toronto, Toronto, Canada,11School of Nursing, York University, Toronto, Canada, 12Center for Health Aging at Providence, Vancouver, Canada

and 13Departments of Family Medicine, and Community Health Sciences, University of Calgary, Calgary, Canada

Accepted for publication 22 November 2010

CorrespondenceNeil DrummondAssociate Professor, Department of Family Medicine,University of CalgaryG012 Health Sciences Centre3330 Hospital Drive N.W.Calgary T2N 4N1, CanadaE-mail: ndrummon@ucalgary.ca

What is known about this topic

d A timely dementia diagnosis may enable indi-viduals to access pharmacological therapies andhealth services, and encourage futurecare-planning.

d However, individuals may wait from 1–3 yearsfrom symptom onset before receiving thediagnosis.

d Research has primarily been conducted withfamily carers; factors including a lack ofawareness about dementia, and attributions ofsymptoms to normal ageing may delayhelp-seeking.

What this paper adds

d This study explored both the experiences of indi-viduals with dementia and carers.

d We explored how the sequence of symptoms,events and personal beliefs about cogni-tive changes may influence decisions to seekcare.

d The dynamic roles, perceptions and interactionsbetween individuals and carers were furtherexamined.

AbstractIncreasing evidence suggests that early diagnosis and

management of dementia-related symptoms may improve the

quality of life for patients and their families. However, indi-

viduals may wait from 1–3 years from the onset of symptoms

before receiving a diagnosis. The objective of this qualitative

study was to explore the perceptions and experiences ofproblem recognition, and the process of obtaining a diagnosis

among individuals with early-stage dementia and their

primary carers. From 2006–2009, six Anglo-Canadians with

dementia and seven of their carers were recruited from the

Alzheimer’s Society of Calgary to participate in semi-struc-

tured interviews. Using an inductive, thematic approach to

the analysis, five major themes were identified: becoming

aware of memory problems, attributing meanings tosymptoms, initiating help-seeking, acknowledging the sever-

ity of cognitive changes and finally obtaining a definitive

diagnosis. Individuals with dementia reported noticing

memory difficulties earlier than their carers. However, initial

symptoms were perceived as ambiguous, and were

normalised and attributed to concurrent health problems. The

diagnostic process was typically characterised by multiple

visits and interactions with health professionals, and a diag-nosis was obtained as more severe cognitive deficits emerged.

Throughout the diagnostic pathway, carers played dynamic

roles. Carers initially served as a source of encouragement to

seek help, but they eventually became actively involved over

concerns about alternative diagnoses and illness management.

A better understanding of the pre-diagnosis period, and the

complex interactions between people’s beliefs and attributions

about symptoms, may elucidate some of the barriers as wellas strategies to promote a timelier dementia diagnosis.

Keywords: dementia, diagnosis, help-seeking, patient-centered

care

372 ª 2011 Blackwell Publishing Ltd

Health and Social Care in the Community (2011) 19(4), 372–381 doi: 10.1111/j.1365-2524.2010.00982.x

Introduction

Providing a timely diagnosis and person-centred care for

individuals with dementia and their families is an impor-

tant healthcare priority (Rimmer et al. 2005). Currently,an estimated 8% of older Canadians have dementia.

Nearly two-thirds of individuals are diagnosed with

Alzheimer’s disease, thus rendering this the most preva-

lent form (McDowell et al. 2004). What begins in the

early stages with memory loss and difficulties managing

routine activities such as grocery shopping and banking,

subsequently progresses to more severe deficits in basic

activities such as bathing and dressing (Perrault et al.2002). Eventually, Alzheimer’s disease advances to a

state of total dependence, and finally death (Small et al.1997).

Despite mild impairments, people with early-stage

dementia and their carers are increasingly recognised as

key collaborators in medical care (Fortinsky 2001). As the

disease progresses, carers often provide considerable

daily care and advocate for services on the patient’sbehalf (Hirschman et al. 2004). Evidence suggests that

earlier diagnosis and management of symptoms may

improve their quality of life. Prompt clinical assessments

may identify reversible causes of cognitive decline (Iliffe

et al. 2003), and pharmacological therapies are modestly

efficacious for individuals with early-stage Alzheimer’s

disease (Hogan et al. 2007). Disclosing the diagnosis may

enable families to find supportive resources (Iliffe et al.2003), promote future care-planning (Connell et al. 2009),

and encourage discussions about observed and expected

cognitive changes and safety risks (Byszweski et al.2007). These benefits are important as persistent diagnos-

tic uncertainty is associated with patient anxiety

(Carpenter et al. 2008), and carer stress is predictive of

adverse outcomes, including increased chronic disease

burden, depression (Ho et al. 2009) and mortality(Schultz & Beach 1999).

However, studies estimate that people may wait on

average from 1–3 years from symptom onset before

receiving a diagnosis (Boise et al. 1999, Hinton et al.2004). This issue is critical because a diagnosis is often

needed to access dementia-specific interventions and ser-

vices (Connell et al. 2009). Delays may reflect the

dynamic processes within and between health profes-sionals, people with dementia and carers (Fortinsky

2001). While most physicians agree that earlier diagnosis

is desirable (Milne et al. 2005), they also note barriers.

Given the insidious onset, high diagnostic uncertainty,

and overlapping symptoms between Alzheimer’s dis-

ease and other dementias (Langa et al. 2004), a rapid

diagnosis is not always possible (Van Hout et al. 2000).

Time pressures can constrain assessments (Pimlott et al.2009), and professional nihilism about diagnostic and

treatment benefits may further deter diagnosis (Cahillet al. 2008).

Understanding the processes by which individuals

determine that symptoms constitute morbidity, and the

factors that shape when and how they seek a diagnosis,

are equally important. Little is known about the uncer-

tain period when a problem has been perceived, but no

diagnosis has been made. The available research has pre-

dominantly focused on carer perceptions. Carers consis-tently attributed the early symptoms to normal ageing or

stress (Clark et al. 2005, Krull 2005). Hinton et al. (2004)

examined cross-cultural differences in the ‘pathways’ to

obtaining a dementia diagnosis, and found that help-

seeking was mainly initiated by carers. Barriers to diag-

nosis included discrimination, lack of culturally appro-

priate resources, language barriers and unsatisfactory

disclosure of the diagnosis (Bowes & Wilkinson 2003,Hinton et al. 2004). Similarly, Hughes et al. (2009)

explored the diagnostic experiences of African–Ameri-

can carers, and suggested that a lack of awareness about

dementia may hinder diagnosis.

This study is part of a larger research programme

examining cross-cultural differences in the pathways to a

diagnosis among four Canadian cultural-linguistic

groups (i.e. Anglo-Canadians, French-Canadians, South-Asian Canadians and Chinese-Canadians). Building on

Cotrell & Schulz’s (1993) critique of the paucity of

research conducted with individuals with dementia, we

sought to understand both the experiences of individuals

with dementia and their carers. To date, few studies have

examined both perspectives on the pre-diagnosis period.

Therefore, this study’s objective was to retrospectively

explore the experiences of Anglo-Canadians withdementia and their carers regarding the sequence of

symptoms and events that preceded the diagnosis, their

beliefs about emergent cognitive changes, and the types

of help sought during personally significant moments of

transition.

Methods

The researchers approached a hospital-affiliated geriat-

rics clinic and the Alzheimer’s Society of Calgary for

assistance with recruitment. Posters describing the study

were distributed, and interested individuals were invited

to contact the researchers. Recruitment occurred from

September 2006–June 2009. This protracted duration

reflects, in part, the study’s narrow inclusion criteria.Individuals had to have been diagnosed with Alzhei-

mer’s disease, vascular or mixed dementia; of Euro–

Canadian descent whose first language was English; able

to recall their pre-diagnostic experiences; to provide

informed consent; and have a carer willing to participate.

Initially, only participants over the age of seventy and

Pathways to a diagnosis of dementia

ª 2011 Blackwell Publishing Ltd 373

diagnosed in the previous 6 months were eligible, butthese criteria were later broadened to include those over

the age of 55, and diagnosed in the previous 2 years.

Ethical approval was obtained from the University of

Calgary’s Conjoint Health Research Ethics Board.

Six participants with dementia (hereafter referred to

as ‘participants’) were recruited from the Alzheimer

Society’s Living with Dementia programme, which com-

bines education and peer-support for recently diag-nosed individuals. One participant identified her son

and daughter-in-law as her carers, resulting in a total of

seven carers. Although based on a small sample, phe-

nomenological studies of this scale may still offer

insights (Morse 1994). As an exploratory study with

both individuals with dementia and carers, groups often

resistant to identification (Egdell et al. 2010), we con-

sider this inquiry as being a first step towards under-standing the nuanced negotiations and psychosocial

processes that shape diagnosis and dementia care (Cot-

rell & Schulz 1993).

Participants were aware of their diagnosis, except for

one individual who recalled being diagnosed with

‘memory problems.’ However, all were prescribed cho-

linesterase-inhibiting medication, which required a for-

mal diagnosis to qualify for the provincial drug plan(Perras et al. 2005). The majority of this sample was

retired, except for one participant and three carers.

Three-quarters of individuals had clerical, sales and

trades-based occupations while one-quarter had health

and social services-based occupations. Table 1 presents

general sample characteristics. All names were replaced

with pseudonyms.

A phenomenological epistemology guided the datacollection and analysis, which requires that the under-

standing of dementia be empirically grounded in the

lived experiences of those affected by the condition

(Bond & Corner 2001). Using a semi-structured interview

guide, trained interviewers explored accounts of theearly symptoms, the subjective meanings given to symp-

toms, and the sequence of events and health service

usage which culminated in a diagnosis. Participants and

carers were interviewed separately, except for one dyad

who requested a joint session. Three-quarters were

interviewed in their homes, and the remainder at an

alternative location of their choice. Interviews ranged

from 30–80 minutes, and were digitally audio-recordedand transcribed verbatim.

The researchers conducted an inductive, thematic

analysis using a qualitative descriptive approach (Sande-

lowski 2000). This approach seeks to comprehensively

describe experiences by staying close to the manifest con-

tent and words of individuals (Boyatzis 1998), and to

organise findings into themes based on a recursive pro-

cess of comparison and refutation (Braun & Clarke2006). Each transcript was read and reread to gain an

overall sense of the data, and a chronology of events was

developed for each individual to broadly summarise

their experiences. Using ATLAS.ti software, initial codes

were generated by assigning category labels to sections

of text to describe the properties and dimensions of the

main themes (Braun & Clarke 2006). Themes were devel-

oped by iteratively comparing the coded contents withineach dyad and then across all participants and carers. In

keeping with the principles of analytic induction, discon-

firming patients were accounted for by modifying preli-

minary understandings until interpretations were

considered comprehensive and inclusive (Ritchie &

Spencer 1994).

To promote rigor and trustworthiness, the researchers

implemented a number of strategies (Creswell 2009).Transcripts were compared against recordings to elimi-

nate transcription errors. Audit trails were developed

using reflexive memos and codebooks to minimise drift

in code definitions. Transparency was encouraged by

Table 1 General sample characteristics

Family Respondents Gender Age Diagnosis Caring for

A Arthur Male 70s Alzheimer’s disease –

Anne Female 70s – Husband

B Betty Female 70s Mixed dementia –

Bryan Male 30s – Mother

Brianne Female 30s – Mother-in-law

C Cliff Male 70s Memory problems –

Cora Female 70s – Husband

D Duncan Male 70s Alzheimer’s disease –

Doreen Female 70s – Husband

E Eileen Female 60s Alzheimer’s disease –

Earl Male 70s – Wife

F Fred Male 50s Alzheimer’s disease –

Fiona Female 50s – Husband

K. K. Leung et al.

374 ª 2011 Blackwell Publishing Ltd

sharing codebooks and subjecting each stage of the anal-yses to critical appraisal during monthly teleconferences.

Findings

Awareness of early signs

Upon reflecting on the earliest signs of dementia, all par-

ticipants and carers reported noticing symptoms approx-

imately 2 to 4 years before receiving a diagnosis. As

Arthur recounted, ‘Looking back I’m sure that [for]… at

least 2, 3, 4 years… I was succumbing to the disease.’

Consistent with the literature, the earliest symptomswere memory problems (Krull 2005). Memory problems

were described as occasional events that affected routine

activities in minor ways, such as having troubles ‘finding

things on your desk’ or ‘remembering where [you]

parked the car’ at the store. Other participants expressed

a general sense of forgetfulness:

Sometimes, you know, you go downstairs to get something

and you can’t remember what it was from upstairs. I’d for-

get something that I’d intended to do. (Duncan)

Comparisons within each dyad revealed considerable

agreement between participants and carers regarding

episodes of memory loss. However, each dyadic memberalso had a unique perspective on early symptoms and

most identified different secondary examples which they

believed were illustrative of cognitive decline. Partici-

pants discussed increasing difficulties in personal and

often individualistic hobbies, such as remembering

painting techniques, completing woodworking projects

or becoming disoriented while hiking. Furthermore, the

majority of participants reported an earlier awareness ofthe symptoms compared to their carers. Speaking of her

husband, one carer stated:

He mentioned things like he couldn’t find a file sitting on

his desk… Like all of us, I was just very busy with what I

was doing day to day… You get home and you have all

your other chores to do, so I wasn’t noticing little things.

(Anne)

Similarly, another participant identified memory

lapses while driving as an early sign and would ask his

wife about their intended destination. Concordance wasevident in that she too recalled those questions. How-

ever, she interpreted those queries as ‘double-checking,’

rather than being suggestive of a health concern.

I started getting these little episodes where I’d be driving

down a road, and I’d been on that road a hundred or so

times, but I just didn’t know where I was at. This was for

maybe twenty-seconds… then it would come back to me

again. (Cliff)

I didn’t notice anything… We’d be on the highway, once

or twice he’d say, ‘Where are we going? Are we going to

Red Deer?’ So he’d double-check.’(Cora)

Attributions about memory problems

Although a problem was becoming evident, particularly

to participants, a number of interacting factors may have

contributed to the perception that medical attention was

not yet necessary. As one participant admitted, ‘I just

kind of ignored it for a long time, you know’ (Eileen). To

varying extents, both participants and carers described

normalising the observed changes and attributing themto contextual factors, especially since the symptoms were

mild and did not interfere with daily tasks.

Among participants, forgetfulness was initially

viewed as a normal, and even expected, everyday expe-

rience. Two participants simply generalised: ‘We all for-

get things’, while one participant thought it was ‘ageing

rather than anything’. Other participants attributed

memory problems to contextual factors including inat-tention or mood:

We all have moments where you’ve misplaced something

and you’re frustrated and maybe you’re rushing to do

something…That could just be a bad day at the office.

(Arthur)

At first, carers likewise believed that these memory

issues were largely unproblematic. Incidents such as for-

getting to take medication or recent travel itinerarieswere attributed to distractedness or hectic schedules.

One carer conveyed how normal memory problems can

be by stating that she too experiences difficulties despite

not having dementia:

He’d just keep on asking me what day it was. But you

know when we’re not working I don’t know what day it

is. I have to look at a calendar too. (Cora)

In addition, all of the carers believed that the memory

decline may have been related in part to concurrent

health issues, such as psychological distress, pre-existing

medical conditions, or medication side-effects. Forinstance, one carer attributed his mother’s memory prob-

lems to hypothyroidism. He explained:

Memory problems… [are] one of the top three clinical

symptoms, signs of hypothyroidism... Saw her starting to

have memory problems… just minor things and I attrib-

uted it to her thyroid disease. (Bryan)

Two carers believed that memory problems may

have been caused by medication side-effects. For exam-ple:

At the same time all this was going on he had uh really

bad… restless leg syndrome. So we were going through

Pathways to a diagnosis of dementia

ª 2011 Blackwell Publishing Ltd 375

several different treatments… trying to find something that

would help that. And we blamed this on his medication.

(Doreen)

Independent help-seeking by participants

Estimates of the duration between first detecting mem-

ory problems and seeking medical care ranged from one

to almost 3 years. In every case, family physicians were

the first health professionals to be contacted. The major-

ity of carers described encouraging and supporting their

family members’ decisions to speak with physicians.

Except for one dyad, where the participant and her hus-band routinely attended all medical appointments

together, participants reported initiating contact with

their physicians alone. These actions are perhaps surpris-

ing but, given the slow progression of the symptoms and

the retention of their capacity, it is understandable that

their medical care remained confidential between physi-

cians and themselves.

She is incredibly independent. No, she’s, she’s always

been, and still is, very independent, so she went to the doc-

tor on her own for the memory problems. (Bryan)

When asked to reflect on what triggered their desire

to seek care, none of the participants identified any onecritical event that definitively triggered their desire to

seek care. In the words of one participant:

I can’t focus on anything that really sort of jumped up at

me and said, ‘My gosh, I don’t remember as well as I used

to.’ (Duncan)

Rather, the majority of participants described recogn-

ising a gradual decline in memory and a sense of not

being as ‘sharp’ as before. Furthermore, half of them

debated whether to seek help at all. For instance, one

participant intended to consult his family physician, but

was worried that he was overreacting:

After two years I figured well, maybe there is something

wrong with me, and maybe I should go talk to the doctor

about it. And a lot of time I was going to talk to [him]

about it… [but I thought], ‘It’s just in my head, that’s all…’

And I didn’t talk to him. (Cliff)

For two participants, the decision to seek medical care

was not intentionally planned. One participant

recounted spontaneously disclosing his memory issues

during his annual physical exam. Another participant

described how she suddenly mentioned memory loss,

just as she was leaving her family physician’s office:

It was a flip comment when I was walking out of the doc-

tor’s office. She had done something for me that was really

quite remarkable. I can’t remember what it was… But it

triggered a snippy response from me, and I said, ‘Oh by

the way can you do anything for memory loss?’ And she

said, ‘Are you having memory loss?’ And I said, ‘Yes.’

(Betty)

However, because symptoms were still largely undif-

ferentiated, no participant was diagnosed with dementia.

Two dyads recalled completing a brief memory assess-

ment, but both were still performing within acceptable

ranges, especially on tasks unrelated to memory. Oneparticipant stated, ‘I had no problems at all subtracting

backwards and the like’ (Fred). His wife similarly

recalled the family physician saying, ‘You don’t have

Alzheimer’s, you’re fine’ (Fiona).

After considering the medical histories and personal

contexts, family physicians provided participants with

alternative diagnoses. For one participant with restless

legs, the doctor confirmed that his memory problemsmay be related to his sleep disturbance. Another partici-

pant who had recently retired was diagnosed with an

adjustment disorder. The majority of participants and

carers initially accepted these diagnoses. However, one

participant, who was a retired construction worker,

doubted the explanation of normal ageing:

[My doctor] said, ‘You know, well when you get older,

you know, you forget.’ Well maybe you do forget. I mean

everybody forgets. But… things were scaring me… I’d

travelled that road hundreds of times… I paved that road,

I know every corner... And all of a sudden I’m driving, I

just blank. (Cliff)

Undeniable cognitive changes

As cognitive changes became more prominent, the pres-

ence of a serious problem became evident. While mem-

ory problems such as misplacing items could easily be

rationalised as absent-mindedness, progressive declinesin abilities and cognition could not be as easily accounted

for. This transition from awareness of memory difficul-

ties to acknowledgement of a clear health condition may

have been influenced by personal and emotionally sali-

ent loss of skills.

I’m trying desperately to recatch my capacity to do oils. I

can do pastels. I didn’t lose that, but I’ve forgotten how to

do oils. I’m telling you, I have forgotten how to do oils.

And I cried. Tears have run down my face twice at art

class because I can’t make the connection… That hurts my

soul. (Betty)

Carers noted the accumulation of problems in multi-

ple cognitive domains. They further described that their

family members’ behaviours became increasingly incon-

sistent with how they ‘used to be’ or ‘were like’. Onecarer recounted that within months, she saw a drastic

change in her husband’s level of insight, abilities and

K. K. Leung et al.

376 ª 2011 Blackwell Publishing Ltd

social relationships, which alerted her to the severity ofhis condition:

It’s almost like he wasn’t aware that it was a problem.

That’s basically what it is. The insight was starting to go.

That’s what I was looking for, I think… He hadn’t taken

care of the bills… Well that’s not like him. When a bill has

to be paid, he paid it… I just knew he wasn’t himself, and

uh, he didn’t play with the grandchildren… He just

couldn’t relate to them at all. He’s totally changed now.

(Doreen)

Observations made by family and friends further val-

idated the carers’ concerns.

I talked with her younger daughter, and [she] had noticed

all the things that I was noticing… I was talking with my

[son-in-law] and ah he was saying twice she got lost com-

ing home from our house. Didn’t know how to get here.

Twice she got lost going over to the other [daughter’s]

house… She’d been to their houses lots of times. Used to

drive me there, telling me how to get there… I worried

that something’s horrible ‘cause she’s not getting better.

(Earl)

Obtaining a diagnosis

Growing suspicion about the presence of serious cogni-

tive changes was a strong impetus for reconsulting the

family physician. Although many of our participantshad initially sought medical advice independently,

carers increasingly played an active role in pursuing a

diagnosis. Of note, many carers recounted their experi-

ences in comparably greater detail than participants.

This trend may partly reflect the participants’ sensitiv-

ity about the diagnosis and the saliency of this event

for carers, as obtaining the diagnosis involved their

active participation and marked the beginning of theircaregiving role. In light of the alternative diagnoses

already provided, carers engaged in the process of

gathering and presenting ‘evidence’ to their physicians

for reconsideration. For example, one carer sent a jour-

nal to their family physician, which documented the

atypical behaviours and events that she observed in

the previous 3 months. Carers also described becoming

‘more insistent’, ‘making an appointment with the doc-tor’ as a family, and ‘mentioning things that (they)

noticed.’ Another carer sought private services to

obtain answers, and she recalled the dramatic response

of the psychologist:

He said, ‘[Your husband] was either hit with a very blunt

instrument, or you better get some medical testing done

because there is something seriously wrong…’ We got on

top of that right away. (Fiona)

Half of our participants were diagnosed by their fam-

ily physician after further testing.

[The family doctor] did wonderful… She did the Mini-

Mental right away, uh and put him on the [Rivastig-

mine]… I couldn’t have asked for anything better … she

ordered several different kinds of tests. So she wanted to

be sure that her diagnosis was correct. (Doreen)

The other participants were diagnosed by specialists

after referral by their family physicians. However, theywaited an additional 2 weeks to a year before receiving a

diagnosis. These delays reflected a number of factors,

including waiting for a specialist appointment, obtaining

neuroimaging studies and having personal travel plans

which interfered with scheduling. The carer of one par-

ticipant who was diagnosed within 2 weeks felt fortu-

nate to receive specialist care so quickly:

I was so impressed because [the geriatrician] phoned. He

came to our house on… [a] holiday and… sat for two

hours through an interview with [my husband] and put

him through a bunch of testing. And right way bumped

him to ten milligrams of [Donepezil]. (Anne)

Discussion

These narratives illustrate the complex processes and

social interactions that constitute the pathway to a diag-

nosis, which develops alongside and in response to theemergence and progression of symptoms. In this sample

of people with dementia and their carers, the pathway

broadly consists of becoming aware of memory prob-

lems, attributing meanings to symptoms, initiating help-

seeking, acknowledging the severity of cognitive changes

and finally obtaining a definitive diagnosis. A small but

growing body of literature is examining the diagnostic

pathways experienced by carers (Hinton et al. 2004, Krull2005, Speechly et al. 2008, Hughes et al. 2009). This study

adds to our understanding by exploring the perspectives

of individuals with dementia as well.

Consistent with the literature, participants with early

dementia were aware of their cognitive changes (Beattie

et al. 2004, Parsons-Suhl et al. 2008), and both they and

their carers reported memory problems as an initial sign

(de Boer et al. 2007). In contrast to previous research,where carers were the first to detect memory problems

and initiate care (Krull 2005, Speechly et al. 2008), this

study found that individuals with dementia noticed their

problems earlier than carers, and played a key role in

independently seeking help, especially at the outset. This

discordance may reflect a variety of factors. Because par-

ticipants were sampled from a peer-support programme,

potentially, they may be more proactive, reflective oftheir experiences through prior story sharing, and may

not experience the disease passively (de Boer et al. 2007).

Equally important to consider, however, is that previous

studies have focused primarily on carers. Our findings

Pathways to a diagnosis of dementia

ª 2011 Blackwell Publishing Ltd 377

suggest that participants and carers may differ in theirexperiences and the subjective meanings given to these

subtle changes. Furthermore, certain cognitive problems

remained undetected by the carer but were salient to the

person with dementia, thus highlighting the importance

of including individuals with dementia in research, as

they are experts on their own experiences.

Memory problems are a core diagnostic criterion of

Alzheimer’s disease (Farlow 2005), but people may notseek help based on memory loss alone. Although partic-

ipants were highly aware of their early cognitive

decline, there was still a lapse of one to nearly 3 years

between the detection of symptoms to the first medical

consultation. This estimate is similar to studies with

carers (Boise et al. 1999, Knopman et al. 2000, Hinton

et al. 2004), and suggests that other factors – beyond the

simplistic explanation of a lack of insight – act asimpediments to timely care. Participants and carers

identified their attributions as a potential factor. Attribu-

tions are beliefs and inferences about the causes of

experiences, and are informed by knowledge, beliefs

and motivations (Kelley & Michela 1980). In turn,

health-related attributions shape interpretations of

symptom severity and help-seeking (Lau & Hartman

1983). Because occasional forgetfulness is a taken-for-granted experience, and commonly expected to increase

with advancing age (Luszcz & Bryan 1999, Sarkisian

et al. 2002), our sample initially viewed medical atten-

tion as largely unnecessary. Furthermore, as four-fifths

of older adults have comorbidities (Gilmour & Park

2003), memory issues were attributed to familiar, pre-

existing health problems and medications rather than

indicators of neurodegenerative illnesses.Although we differentiated between the themes of

attribution and help-seeking, in practice, these processes

are closely linked. Participants and carers experienced

fluctuating and cyclical moments of recognising the pres-

ence of cognitive problems, normalising their experi-

ences, and acknowledging the need to seek help. This

trend of gradual acknowledgement is consistent with

findings from other studies on delayed help-seeking fordementia. MacQuarrie’s (2005) interviews with recently

diagnosed individuals suggested that people simulta-

neously acknowledge and resist the implications of their

memory loss and the potential dementia diagnosis. Clare

(2003) similarly theorised that there is a dynamic tension

between attempting to protect oneself from threat by

normalising daily difficulties, while also wanting to con-

front and adapt to these changes. The interaction of suchexperiences with underlying factors, such as a lack of

knowledge about dementia symptoms (Boise et al. 1999),

anxiety about the diagnosis, and challenges discussing

concerns with physicians (Clark et al. 2005), may contrib-

ute to delayed help-seeking.

Within this sample, obtaining a diagnosis was charac-terised by repeated interactions with health services, and

shifts in personal evaluations about cognitive decline.

Dixon-Woods et al. (2006) proposed that accessing health

services requires asserting one’s ‘candidacy’ or eligibility

for medical attention and care. Help-seeking was contin-

gent on participants and carers recognising that the level

of functioning no longer met their personal expectations

regarding abilities and skills, nor culturally constructedbeliefs about normal ageing and the accepted ‘vagaries

of old age’ (Howse et al. 2005, Cahill et al. 2008). Carers

had dynamic roles which evolved from encouraging

help-seeking by family members to assisting their family

members in obtaining a diagnosis. They further corrobo-

rated the concerns of their family members by gathering

evidence of progressive problems and articulating those

concerns to physicians.

Implications for Care

A better understanding of the pre-diagnosis period may

help to identify and address delays in obtaining a diag-

nosis. Our study found that individuals interpreted early

ambiguous symptoms as normal events and hesitated inapproaching physicians about their concerns. Underpin-

ning both trends is a lack of easily accessible public infor-

mation about dementia. As advocated by others, greater

public awareness about the risk factors, warning signs

and how to obtain care for cognitive decline is needed

(Dalziel 2007, Friedman et al. 2009). Many of these barri-

ers are common across other illnesses, including cancer

(Smith et al. 2005) and stroke (Zerwic et al. 2007), andexamining effective interventions in reducing delays

among these conditions may offer additional insights.

Our study found that individuals with dementia per-

ceive the earliest symptoms of cognitive decline, even if

they do not immediately act on them. Interventions pro-

moting earlier help-seeking for dementia should address

the needs of both carers and individuals with cognitive

decline, and should be sensitive to possible mixed feel-ings of uncertainty, normalisation and acknowledge-

ment. Using elements of avoidance and denial as coping

strategies create distance from anxiety about a condition

(Levine et al. 1987), but may delay access to beneficial

care. A careful, person-centred approach to discussing

personal risks for dementia is needed, especially given

the linkage between fear of the diagnosis, stigma and

social withdrawal (Vernooij-Dassen et al. 2005).Since individuals may not seek prompt medical atten-

tion, there is considerable debate about targeted screen-

ing of individuals at risk for dementia (Soloman &

Murphy 2005, Dalziel 2007). Screening may improve

case-finding and lead to earlier diagnosis, but a system-

atic investigation into its effectiveness is required (Brayne

K. K. Leung et al.

378 ª 2011 Blackwell Publishing Ltd

et al. 2007). Furthermore, greater research into how phy-sicians perceive the role of carers in clinical encounters is

needed. Researchers have raised legitimate concerns

about the tendency to prioritise the perspective of carers

over those with dementia (Fortinsky 2001). However,

our sample of carers contributed positively to the diag-

nosis through their observations of cognitive changes.

Strategies such as encouraging individuals to document

their observations and obtaining consent for carers to becollaborators in care may empower all parties involved,

enhance dementia care and reduce role ambiguity.

Finally, when individuals present with mild impair-

ments, but do not yet meet the dementia diagnostic crite-

ria, periodic monitoring is necessary. As exemplified by

this study, it was only through careful observations and

repeated consultations that clinically significant declines

were detected, attributions of normal ageing and alterna-tive medical conditions were re-evaluated, and diagnos-

tic investigations for dementia were initiated. As

interdisciplinary healthcare continues to grow (Rosser

et al. 2010), psychologists, social workers and nurses may

increasingly bring their expertise to the assessment pro-

cesses, and in monitoring cognitive and psychosocial

functioning. A collaborative approach may reduce time

pressures on physicians, which is a known barrier todiagnosis and comprehensive care (Pimlott et al. 2009).

Limitations

To our knowledge, this study is one of the few to exam-

ine the pre-diagnostic period from the perspectives of

both individuals with dementia and carers. However,this study has some limitations. First, it is based on a

small, volunteer sample recruited from a community

advocacy organisation for dementia. Our findings may

reflect the experiences of a specific subset of individuals

who are proactive and socially engaged. However, we

argue that their voices and experiences are important to

understanding the spectrum of dementia help-seeking

behaviours. Second, to understand the pre-diagnosis per-iod, we conducted retrospective interviews with partici-

pants who have mild memory loss. This may have

introduced some recall bias, although this effect was lim-

ited by recruiting recently diagnosed individuals. More-

over, these narratives may have been shaped by and

reinterpreted within the context of each individual’s cur-

rent experiences and understanding of dementia (Denzin

& Lincoln, 2003). While some insights may have beeninfluenced by hindsight, they nonetheless provide

understanding of the pre-diagnosis period. Future work

may include conducting a prospective series of inter-

views with people with undiagnosed cognitive decline,

and following their experiences and pathway as it

unfolds.

Conclusions

The pathway to a dementia diagnosis is shaped by com-

plex interactions between the person with dementia,

carers, health services and wider social-cultural beliefs

about ageing. Although symptomatic memory loss is akey diagnostic criterion, it may not be sufficient to trigger

help-seeking. Rather, individuals tend to delay medical

attention until more definitive, but severe, cognitive defi-

cits emerge. These findings may offer insights into how

individuals negotiate their perceived needs for medical

help, and how dementia care may be improved particu-

larly in the early stages.

Author contribution

This study was a multi-center collaboration between

Providence Health Care, Brock University, and the

Universities of Calgary, Ottawa and Toronto. As a

result, more than six authors are credited, and all

have contributed substantially to this paper.Drs. Cohen, Dalziel, Drummond, Emerson, Garcia,

Koehn, Kozak, McCleary, Silvius, and Ms. Finlay

conceived this study. Drs. Drummond, Emerson,

Garcia, Koehn, McCleary, Persaud and Ms. Hum

provided methodological expertise and guidance on

the data analysis; Ms. Leung and Finlay analysed the

data and Ms. Leung drafted the manuscript; all

authors provided substantive input at various stagesthrough monthly telephone conferences and bian-

nual face-to-face meetings; all authors have critically

reviewed the content and have approved the final

version prior to submission.

Acknowledgements

We thank colleagues at the University of Calgary’s

Department of Family Medicine for their comments, as

well as the Alzheimer’s Society of Calgary, Rockyview

General Hospital Seniors’ Health Clinic and our study

participants for their assistance. This work is supported

by the Social Sciences and Humanities Research Council

of Canada, and a summer studentship from the Univer-

sity of Calgary’s Markin Undergraduate Student

Research Programme (USRP) in Health and Wellness.

References

Beattie A., Daker-White G., Gilliard J. & Means R. (2004)‘How can they tell?’ A qualitative study of the views ofyounger people about their dementia and dementia careservices. Health & Social Care in the Community 12 (4),359–368.

de Boer M.E., Hertogh C.M.P.M., Droes R., Riphagen I.I.,Jonker C. & Eefsting J.A. (2007) Suffering from dementia

Pathways to a diagnosis of dementia

ª 2011 Blackwell Publishing Ltd 379

– the patient’s perspective: a review of the literature.International Psychogeriatrics 19 (6), 1021–1039.

Boise L., Morgan D.L., Kaye J. & Camicioli R. (1999) Delaysin the diagnosis of dementia: perspectives of family care-givers. American Journal of Alzheimer’s Disease & OtherDementias 14 (1), 20–26.

Bond J. & Corner L. (2001) Researching dementia: are thereunique methodological challenges for health servicesresearch? Ageing & Society 21 (1), 95–116.

Bowes A. & Wilkinson H. (2003) ‘We didn’t know it wouldget that bad’: South Asian experiences of dementia andthe service response. Health & Social Care in the Commu-nity 11 (5), 387–396.

Boyatzis R.E. (1998) Transforming Qualitative Information:Thematic Analysis and Code Development. Sage Publica-tions, Thousand Oaks, CA.

Braun V. & Clarke V. (2006) Using thematic analysis in psy-chology. Qualitative Research in Psychology 3 (2), 77–101.

Brayne C., Fox C. & Boustani M. (2007) Dementia screeningin primary care: is it time? Journal of the American MedicalAssociation 298 (20), 2409–2411.

Byszweski A.M., Molnar F.J., Aminzadeh F., Eisner M.,Gardezi F. & Raewyn B. (2007) Dementia diagnosis dis-closure: a study of patient and caregiver perspectives.Alzheimer Disease & Associated Disorders 21 (2), 107–114.

Cahill S., Clark M., O’Connell H., Lawlor B., Coen R.F. &Walsh C. (2008) The attitudes and practices of generalpractitioners regarding dementia diagnosis in Ireland.International Journal of Geriatric Psychiatry 23 (7), 663–669.

Carpenter B.D., Xiong C., Porensky E.K. et al. (2008) Reac-tion to a dementia diagnosis in individuals with Alzhei-mer’s disease and mild cognitive impairment. Journal ofthe American Geriatrics Society 56 (3), 405–412.

Clare L. (2003) Managing threats to self: awareness in earlystage Alzheimer’s disease. Social Science & Medicine 57(6), 1017–1029.

Clark P.C., Kutner N.G., Goldstein F.C. et al. (2005) Impedi-ments to timely diagnosis of Alzheimer’s disease in Afri-can Americans. Journal of the American Geriatrics Society53 (11), 2012–2017.

Connell C.M., Roberts J.S., McLaughlin S.J. & CarpenterB.D. (2009) Black and white adult family members’ atti-tudes toward a dementia diagnosis. Journal of the Ameri-can Geriatrics Society 57 (9), 1562–1568.

Cotrell V. & Schulz R. (1993) The perspective of the patientwith Alzheimer’s disease: a neglected dimension ofdementia research. The Gerontologist 33 (2), 205–211.

Creswell J.W. (2009) Research Design: Qualitative, Quantita-tive and Mixed Methods Approaches, 3rd ed. Sage Publica-tions, Thousand Oaks, CA.

Dalziel W.B. (2007) Vascular concept: vascular risk factorsand AD. The Canadian Review of Alzheimer’s Disease andOther Dementias 10 (3), 4–8.

Denzin N.K. & Lincoln Y.S. (2003) Collecting and InterpretingQualitative Materials, 2nd ed. Sage Publications, ThousandOaks, CA.

Dixon-Woods M., Cavers D., Agarwal S. et al. (2006) Con-ducting a critical interpretive synthesis of the literatureon access to healthcare by vulnerable groups. BMC Medi-cal Research Methodology 6, 35.

Egdell V., Bond J., Brittain K. & Jarvis H. (2010) Disparateroutes through support: Negotiating the sites, stages andsupport of informal dementia care. Health & Place 16 (1),101–107.

Farlow M.R. (2005) Moderate to severe Alzheimer dis-ease: definition and clinical relevance. Neurology 65 (S3),1–4.

Fortinsky R.H. (2001) Health care triads and dementia care:integrative framework and future directions. Aging &Mental Health 5 (S1), 35–48.

Friedman D.B., Laditka J.N., Hunter R. et al. (2009) Gettingthe message out about cognitive health: a cross-culturalcomparison of older adults’ media awareness and com-munication needs on how to maintain a healthy brain.The Gerontologist 49 (S1), 50–60.

Gilmour H. & Park J. (2003) Dependency, chronic condi-tions and pain in seniors. Supplement to Health Reports 16,21–31.

Hinton L., Franz C. & Friend J. (2004) Pathways to demen-tia diagnosis: evidence for cross-ethnic differences.Alzheimer Disease & Associated Disorders 18 (3), 134–144.

Hirschman K.B., Xie S.X., Feudtner C. & Karlawish J.H.(2004) How does an Alzheimer’s disease patients’ role inmedical decision making change over time? Journal ofGeriatric Psychiatry and Neurology 17 (2), 55–60.

Ho S.C., Chan A., Woo J., Chong P. & Sham A. (2009)Impact of caregiving on health and quality of life: a com-parative population-based study of caregivers of elderlypersons and noncaregivers. The Journals of GerontologySeries A: Biological Sciences and Medical Sciences 64A (8),873–879.

Hogan D.B., Bailey P., Carswell A. et al. (2007) Manage-ment of mild to moderate Alzheimer’s disease anddementia. Alzheimer’s & Dementia 3 (4), 355–384.

Howse K., Ebrahim S. & Gooberman-Hill R. (2005) Help-avoidance: why older people do not always seek help.Reviews of Clinical Gerontology 14 (1), 63–70.

Hughes T., Tyler K., Danner D. & Carter A. (2009) AfricanAmerican caregivers: an exploration of pathways andbarriers to a diagnosis of Alzheimer’s disease for a fam-ily member with dementia. Dementia: The InternationalJournal of Social Research & Practice 8 (1), 95–116.

Iliffe S., Manthorpe J. & Eden A. (2003) Sooner or later?Issues in the early diagnosis of dementia in generalpractice: a qualitative study. Family Practice 20 (4), 376–381.

Kelley H.H. & Michela J.L. (1980) Attribution theory andresearch. Annual Review of Psychology 31, 457–501.

Knopman D., Donohue J.A. & Gutterman E.M. (2000) Pat-terns of care in the early stages of Alzheimer’s disease:impediments to timely diagnosis. Journal of the AmericanGeriatrics Society 48 (3), 300–304.

Krull A.C. (2005) First signs and normalizations: caregiverroutes to the diagnosis of Alzheimer’s disease. Journal ofAging Studies 19 (4), 407–417.

Langa K.M., Foster N.L. & Larson E.B. (2004) Mixeddementia: emerging concepts and therapeutic implica-tions. The Journal of the American Medical Association 292(23), 2901–2908.

Lau R.R. & Hartman K.A. (1983) Common sense represen-tations of common illnesses. Health Psychology 2 (2),167–185.

Levine J., Warrenburg S., Kerns R. et al. (1987) The role ofdenial in recovery from coronary heart disease. Psychoso-matic Medicine 49 (2), 109–117.

Luszcz M.A. & Bryan J. (1999) Toward understanding age-related memory loss in late adulthood. Gerontology 45 (1),2–9.

K. K. Leung et al.

380 ª 2011 Blackwell Publishing Ltd

MacQuarrie C.R. (2005) Experiences in early stage Alzhei-mer’s disease: understanding the paradox of acceptanceand denial. Aging & Mental Health 9 (5), 430–441.

McDowell I., Xi G., Lindsay J. & Tuokko H. (2004) CanadianStudy of Health and Aging: study description and pat-terns of early cognitive decline. Aging, Neuropsychology,and Cognition 11 (2,3), 149–168.

Milne A.J., Hamilton-West K. & Hatzidimitriadou E. (2005)GP attitudes to early diagnosis of dementia: evidence ofimprovement. Aging & Mental Health 9 (5), 449–455.

Morse J.M. (1994) Designing funded qualitative research.In: N.K. Denzin & Y.S. Lincoln (Eds) Handbook of Qualita-tive Research, pp. 220–235. Sage Publications, ThousandOaks, CA.

Parsons-Suhl K., Johnson M.E., McCann J.J. & Solberg S.(2008) Losing one’s memory in early Alzheimer’s disease.Qualitative Health Research 18 (1), 31–42.

Perras C., Shukla VK., Lessard C., Skidmore B., BergmanH. & Gauthier S. (2005) Cholinesterase Inhibitors for Alzhei-mer’s Disease: A Systematic Review of Randomized ControlledTrials. [Technology report no 58]. Canadian CoordinatingOffice for Health Technology Assessment, Ottawa.

Perrault A., Wolfson C., Egan M., Rockwood K. & HoganD.B. (2002) Prognostic factors for functional indepen-dence in older adults with mild dementia: results fromthe Canadian Study of Health and Aging. Alzheimer Dis-ease and Associated Disorders 16 (4), 239–247.

Pimlott N.J.G., Persaud M., Drummond N. et al. (2009)Family physicians and dementia in Canada: Part 2.Understanding the challenges of dementia care. CanadianFamily Physician 55 (5), 508–509.

Rimmer E., Stave C., Sganga A. & O’Connell B. (2005)Implications of the Facing Dementia Survey for policymakers and third-party organizations across Europe.International Journal of Clinical Practice 59 (S146), 34–38.

Ritchie J. & Spencer L. (1994) Qualitative data analysis forapplied policy research. In: A. Bryman & R. Burgess(Eds) Analysing Qualitative Data, pp. 173–194. Routledge,London.

Rosser W.W., Colwill J.M., Kasperi J. & Wilson L. (2010)Patient-centered medical homes in Ontario. The NewEngland Journal of Medicine 362 (3), e7.

Sandelowski M. (2000) Whatever happened to qualitativedescription? Research in Nursing & Health 23 (4), 334–340.

Sarkisian C.A., Hays R.D. & Mangione C.M. (2002) Doolder adults expect to age successfully? The associationbetween expectations regarding aging and beliefsregarding healthcare seeking among older adults. Jour-nal of the American Geriatrics Society 50 (11), 1837–1843.

Schultz R. & Beach S.R. (1999) Caregiving as a risk factorfor mortality: the Caregiver Health Effects Study. Jour-nal of the American Medical Association 282 (23), 2215–2219.

Small G.W., Rabins P.V., Barry P.P. et al. (1997) Diagnosisand treatment of Alzheimer disease and related disor-ders. Consensus statement of the American Associationfor Geriatric Psychiatry, the Alzheimer’s Association, andthe American Geriatrics Society. Journal of the AmericanMedical Association 278 (16), 1363–1371.

Smith L.K., Pope C. & Botha J.L. (2005) Patients’ help-seek-ing experiences and delay in cancer presentation: a quali-tative synthesis. Lancet 366 (9488), 825–831.

Soloman P.R. & Murphy C.A. (2005) Should we screen forAlzheimer’s disease: a review of the evidence for andagainst screening for Alzheimer’s disease in primarycare. Geriatrics 60 (11), 26–31.

Speechly C.M., Bridges-Webb C. & Passmore E. (2008) Thepathway to dementia diagnosis. Medical Journal of Austra-lia 189 (9), 487–489.

Van Hout H., Vernooij-Dassen M., Bakker K., Blom M. &Grol R. (2000) General practitioners on dementia: tasks,practices and obstacles. Patient Education and Counseling39 (2,3), 219–225.

Vernooij-Dassen M.J.F.J., Moniz-Cook E.D., Woods R.T.et al. (2005) Factors affecting timely recognition and diag-nosis of dementia across Europe: from awareness tostigma. International Journal of Geriatric Psychiatry 20 (4),377–386.

Zerwic J., Hwang S.Y. & Tucco L. (2007) Interpretation ofsymptoms and delay in seeking treatment by patientswho have had a stroke: exploratory study. Heart & Lung:The Journal of Acute and Critical Care 36 (1), 25–34.

Pathways to a diagnosis of dementia

ª 2011 Blackwell Publishing Ltd 381