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Emotional impact of dementia diagnosis: Exploringpersons with dementia and caregivers’ perspectivesFaranak Aminzadeh a , Anna Byszewski b c , Frank J. Molnar d & Marg Eisner ea The Ottawa Hospital , Civic Campus , Ottawab University of Ottawa , Canadac Ottawa Hospital Civic Campus Geriatric Day Hospitald University of Ottawa Institute on Health of the Elderlye Family Support & Education, Alzheimer Society of Ottawa , CanadaPublished online: 01 Jun 2007.

To cite this article: Faranak Aminzadeh , Anna Byszewski , Frank J. Molnar & Marg Eisner (2007) Emotional impact ofdementia diagnosis: Exploring persons with dementia and caregivers’ perspectives, Aging & Mental Health, 11:3, 281-290,DOI: 10.1080/13607860600963695

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Aging & Mental Health, May 2007; 11(3): 281–290

ORIGINAL ARTICLE

Emotional impact of dementia diagnosis: Exploring persons with

dementia and caregivers’ perspectives

FARANAK AMINZADEH1, ANNA BYSZEWSKI2,3, FRANK J. MOLNAR4, &MARG EISNER5

1The Ottawa Hospital, Civic Campus, Ottawa, 2University of Ottawa, Canada, 3Ottawa Hospital Civic Campus Geriatric

Day Hospital, 4University of Ottawa Institute on Health of the Elderly, and 5Family Support & Education, Alzheimer Society

of Ottawa, Canada

(Received 31 March 2006; revised 10 July 2006; accepted 26 July 2006)

AbstractThis paper examined the emotional impact of diagnosis disclosure on recently diagnosed people with dementia. Thirtypatient/caregiver dyads attending a Geriatric Day Hospital Program in Ottawa, Canada participated in this qualitativeexploratory study. Data sources included: (a) audio-tapes of diagnosis disclosure meeting, (b) in-depth interviews withpatients and caregivers within one week of disclosure, and (c) focus group interviews with caregivers within one month.Patients exhibited a range of emotional responses which can be divided into three broad categories: (a) responses suggestinga lack of insight and/or an active denial of the diagnosis, (b) grief reactions/emotional crisis related to the experience ofactual or anticipated losses associated with dementia, and (c) positive coping responses to maximize the disease outcome.Participants went through stages of emotional response to their diagnosis: not noticing symptoms, noticing & covering up,or noticing & revealing; diagnostic process & disclosure; confirming or shock; denial, crisis, or maximizing; disorganizationor adaptation. There is a need to develop a better understanding of the experience of people with dementia at the criticalpoint of diagnosis disclosure in order to design supportive interventions to maximize adaptive coping responses.

Introduction

Over the past decade, there has been a growingawareness of the importance of a person-centeredand holistic approach to dementia care (Cheston& Bender, 1999; Woods, 2001). The traditionalbiomedical conceptualization of dementia as aneurological impairment has led to the developmentof drug therapies to alleviate the symptoms andcognitive rehabilitation interventions to maximizecognitive capabilities. However, it is increasinglyrecognized that the clinical manifestation of demen-tia cannot be fully explained by the neurologicaldeficits alone, and that psychosocial factorslargely influence the experience of dementia ill-nesses. For instance, unmet emotional needs and‘malignant social contexts’ have been identified asimportant contributing factors to mood disorders,behavioral problems, and ‘excess disability’ com-monly manifested in dementia (Kitwood, 1990;Woods, 2001). This more complex and multi-dimensional re-appraisal of dementia has led toa new research interest in exploring the meaningof illness from the perspective of the people withdementia.

Dementia has been described as the modernepidemic of later life and the most feared diagnosisby older adults (Bond & Corner, 2001). A recentsystematic review (Bamford et al., 2004) revealedthat between one-third to two-thirds of practitionersreport difficulty disclosing the diagnosis to peoplewith dementia. In fact, diagnosis disclosure hasbeen cited as one of the five most difficult aspectsof dementia care by physicians and nurses (Bamfordet al., 2004). The most common concerns presentedby practitioners are: the risk of causing emotionaldistress, the stigma associated with the diagnosticlabel, uncertainties about the ability of the personto understand and retain the diagnosis; and thelack of a cure or effective treatment for dementia(Bamford et al., 2004; Biernacki, 2003; Johnson,Bouman, & Pinner, 2000). Similar concerns havebeen expressed by family caregivers who oftenexpress the desire not to disclose the diagnosis tothe person with dementia (Bamford et al., 2004;Pinner, 2000; Pinner & Bouman, 2002).

However, systematic attempts to gather researchevidence from people with dementia about their

Correspondence: Faranak Aminzadeh, Regional Geriatric Assessment Program of Ottawa, The Ottawa Hospital,Civic Campus, 1053 Carling Av.Ottawa, ON, K1Y 4E9. Tel: (613) 798-5555 (13458). Fax: (613) 761-5334.E-mail: faminzad@magma.ca

ISSN 1360-7863 print/ISSN 1364-6915 online/07/030281–290 � 2007 Taylor & FrancisDOI: 10.1080/13607860600963695

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feelings and attitudes concerning dementia diagnosisare few. Early anecdotal and empirical observationspoint to a wide spectrum of insight, psychologicalreactions, and coping responses to dementia diag-nosis (Bamford et al., 2004; Henderson & Andrews,1998; Jha, Tabet, & Orrell, 2001; Post, 1992; Pratt& Wilkinson, 2001). Some studies have reporteda range of negative emotional reactions to thediagnosis, including anger, anxiety, fear, depression,despair, or even suicidal ideation (Bamford et al.,2004; Bender & Cheston, 1997; Henderson, 1998;Husband, 1999, 2000; Rohde, Peskind, & Raskind,1995; Wilkinson & Milne, 2003; Woods, 2001).Moreover, there are reports of the negative effectof dementia diagnosis on the sense of personhood,self-esteem and self-confidence, and the use ofmaladaptive coping mechanisms, such as denial,externalization, somatization, and self blame follow-ing a diagnosis of dementia (Bahro, Silber, &Sunderland, 1995; Bamford et al., 2004; Bender& Cheston, 1997).

However, there are also reports of the negativeimpact of non-disclosure or the provision of a vaguediagnosis, resulting in confusion and emotionaldistress (Bamford et al., 2004; Wilkinson & Milne,2003). Furthermore, there are many positive con-sequences of the diagnosis disclosure identified bypeople with dementia and their caregivers, including:psychological benefits (e.g., confirmation of suspi-cion, sense of relief, opportunity to develop positivecoping skills, and chance to make most of time),improved understanding of the problems associatedwith dementia and potential solutions, better deci-sion making and future planning, and increasedaccess to available treatment and support services(Bamford et al., 2004; Biernacki, 2003; Connell,Roise, Stuckey, Holmes, & Hudson, 2004;Wilkinson & Milne, 2003). In addition to psycho-social and practical benefits, there are also moral andethical reasons to disclose, such as respect for theperson’s right to know and self-determination(Fearnley, McLennan, & Weaks, 1997; Pinner,2000). Thus, many international guidelines favorthe disclosure of dementia diagnosis, while high-lighting the importance of supportive interventionsto help people adjust (Fearnley et al., 1997; Post,Whitehouse, & Fairhill, 1995).

However, to date, there has been little person-oriented research to inform the development ofevidence-based supportive dementia disclosurepractices. Most empirical studies of diagnosis dis-closure in dementia have focused on exploringprofessionals’ attitudes and practices, and caregivers’perspectives and coping (Bamford et al., 2004).The views, experiences and coping responses ofpeople with dementia remain largely under-researched. Exceptions are a few recent studies thathave examined appraisal and coping processesof people in early stages of dementia (Clare,2003; Harman & Clare, 2006: Pearce, Clare, &

Pistrang, 2002). A common finding in these studiesis the dilemma of people with dementia, who haveto balance their desire to maintain a prior sense ofself (therefore, attempting to minimize the impactof change) against the need to re-appraise andre-construct self in accordance with the effects ofillness.

Finally, there have been early attempts to postu-late longitudinal models of psychological responseto dementia as people move through stages ofdisease progression. Cohen and colleagues (1984)described six phases of adaptation, beginning withthe pre-diagnostic period and ending in the finalstage of the disease: recognition and concern(pre-diagnosis); denial (during diagnosis); anger,guilt, and sadness (post-diagnosis); coping; matura-tion; and separation from self. Keady and Nolan(1995) proposed a model comprising the followingstages: slippping, suspecting, covering up, revealing,confirming, surviving/maximizing, disorganization,decline, and death. Finally, Pratt & Wilkinson(2001) described the stages of emotional reactionto the dementia diagnosis, with the individualsmoving through them in no linear order: noticingsymptoms, diagnosis process, diagnosis disclosure,crisis, prognosis, maximizing coping, denial, anddistress. The transferability and clinical utility ofthese preliminary models need to be furtherestablished.

Clearly, more research is needed to better under-stand the perspectives and experiences of peoplewith dementia in different stages of the diseasetrajectory. In particular, there is a pressing needto examine the emotional and service needs of theseindividuals in the diagnostic phase. A recentsystematic review, recommends qualitative researchto increase our understanding of the meaning,process and impact of disclosure from the perspec-tive of people with dementia (Bamford et al., 2004).This knowledge can help design supportive inter-vention strategies that could be used by professionaland family caregivers to more effectively respondto the needs of people with dementia in this mostchallenging time. This study is part of a largerqualitative research that explored perspectives, atti-tudes and experiences of people with dementiaand their caregivers with regard to the disclosureof a diagnosis of dementia. The main objective ofthis paper is to examine the emotional impactof disclosure of a dementia diagnosis on peoplewith dementia both from their perspectives andthose of their caregivers.

Method

Sample and setting

This qualitative exploratory study targeted thepatients of a comprehensive interdisciplinary geria-tric day hospital program in an acute care academic

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hospital in Ottawa, Canada. The sampling frameincluded all new patients (and their primary care-givers), who received a diagnosis of probableAlzheimer’s Disease (AD) and/or vascular dementiaover a period of four months. These two mostcommon types of dementia diagnosis were chosenin order to capture any differences in emotionalreactions to the two diagnostic labels. A primarycaregiver was defined as the family member or friendwho was most involved with the person in theprocess of day hospital assessment.

In this setting, patients receive in-depth interdis-ciplinary comprehensive geriatric assessment, diag-nosis, short-term treatment, education, and referralto support services. The program typically involves5–6 weekly clinic visits each lasting about 2–3 hoursand concludes with an interdisciplinary familymeeting to disclose the diagnosis and to educatethe patient and caregivers about the findings andrecommendations. The interdisciplinary familymeeting is considered the preferred approach todementia diagnosis disclosure in most cases (unlessthe patient and/or caregiver express the wish to havea one-on-one meeting with the disclosing physician).Finally, patients who are given a diagnosis of ADor mixed dementia (AD and vascular dementia) areoffered a trial of cholinesterase inhibitors (cognitiveenhancing drugs) and receive a three-monthfollow-up appointment.

Recruitment and data collection

A person-centred and caring approach was usedthroughout the research process (Dewing, 2002;Woods & Pratt, 2005). Over the study recruitmentperiod, all patients who were referred for anassessment of their cognitive function (and theircaregivers) received an information sheet on theiradmission to the program to inform them about thestudy and their possible inclusion. This approachwas used so that if the dyads were selected toparticipate, they would not learn of the study forthe first time just prior to the disclosure meeting.Those who met the study inclusion criteria werenotified of their eligibility when contacted by the dayhospital staff to arrange for the disclosure meetingand were informed to arrive earlier in order todiscuss their possible interest in participating in thestudy. Prior to the meeting, a member of the clinicalteam explained in simple language the study purposeand procedures, and the participants’ rights. It wasemphasised that the participants retained the rightto withdraw their consent at any time to any or allcomponents of the study and that their participationin the study (or their refusal to participate), wouldin no way affect the care they received. Thisinformation was also provided in writing on theconsent forms. The capacity of the person withdementia to provide informed and voluntary consentwas established during the day hospital assessment

and was further ascertained by determining whetherthe explanations about the study, and its risks andbenefits, were understood. When the person’scapacity was doubtful, both the authorisation ofthe caregiver and the assent of the person withdementia were sought (Agarwal, Ferran, & Wolson,1996). The study was approved by The OttawaHospital Research Ethics Board.

To ensure richness and validity of information,longitudinal and comprehensive data were gathered,using multiple points of data collection and triangu-lation of data sources:

(a) tape recording of the disclosure meeting(b) separate in-depth face-to-face interviews with

patients and caregivers within one week ofdisclosure

(c) focus group interviews with a sub-group ofcaregivers within one month of disclosure(to have a joint discussion of the impact of thediagnosis on people with dementia and theirobserved reactions in the immediate post-diagnostic phase)

(d) field observations by a research assistant whoattended the disclosure meetings and conductedinterviews. Pre-tested interview guides wereused to solicit participants’ responses duringthe interviews. An experienced research assis-tant with the knowledge and sensitivity ofworking with older people with dementia andtheir caregivers was carefully selected for thisstudy. The first transcripts from the disclosuremeetings and in-depth interviews were reviewedby the research team to ensure that skillful andtactful interviewing techniques were used andquality data were gathered (Dewing, 2002;Mckillop & Wilkinson, 2004). For instance,care was taken to be sensitive to verbal and non-verbal signs of distress resulting from participa-tion in the study, and ensure that questionswere not leading, and that the diagnostic labelwas not mentioned unless participants first usedthe terms themselves.

Data coding and analysis

All data were transcribed and imported into aqualitative data analysis software (Nudist, N6).Two sets of codes were generated:

(a) data management codes for the efficient accessand management of large corpus of data; and

(b) conceptual codes for data interpretation andanalysis.

Frequent research meetings were held to developand review conceptual coding schemes and todiscuss the interpretation of findings. The work ofStrauss and Corbin (1998) guided the analysisprocess for this paper: fractured data were re-readcarefully using ‘asking of questions’ and ‘makingof comparisons’ procedures to isolate patterns and

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themes, refine conceptual codes, discover common-alities and variations, and identify relationships.In the final stage, findings were placed into thecontext of the established literature.

Results

Sample profile

Thirty patient-caregiver dyads participated in thediagnosis disclosure meeting and in-depth inter-views, and a sub-sample of 12 caregivers attendedthe three focus group interviews held approximatelyone month after the disclosure (all caregiverswere invited to attend the focus groups, but onlya sub-sample were available to participate). Eightpatient-caregiver dyads approached for participationin the study declined. A review of socio-demographicand health characteristics of the sample and refusalsdid not reveal any significant differences betweenthe two groups. Table I presents the sample profile.As shown, the majority of patients were female,over age 75, English speakers, with high schoolor higher levels of education, experiencing mildcognitive and functional impairment, and living intheir own home. Most primary caregivers were adultchildren, followed by spouses.

Immediate response to diagnosis disclosure

The majority of persons who received a diagnosisof AD and mixed dementia (AD and vasculardementia) displayed obvious signs of shock and

distress in reaction to the diagnosis disclosure.The negative reaction, which was expressed bothverbally and in body language, seemed to beprimarily to the label AD. Some typical responseswere: ‘I just never thought it was going to hit me.

It’s upsetting.’, ‘Alzheimer, yeah. A very notorious

name’ and ‘Oh God, don’t say that to me’. However,the diagnosis of vascular dementia did not elicit quitethe same negative response. The lack of reaction didnot appear to be due to the incomprehensibilityof term ‘vascular dementia’, because in most casesthe diagnosis was explained in lay language, usingmore familiar vocabulary (e.g., ‘stroke’) to describethe underlying pathophysiology of the disease.Interestingly, whenever the term AD was mentionedduring the disclosure of a diagnosis of vasculardementia, these patients also reacted by eitherdisplaying signs of distress, when it was suggestedthat they may require further testing for thepossibility of AD, or relief, when AD was ruledout. The following field notes from the disclosuremeetings provide examples of such reactions:

When told her diagnosis was vascular dementia,the patient affect remained flat as if the wordsdidn’t impact her in any way. But, when thedoctor mentioned the possibility of AD,she frowned, looked away, said, ‘‘Oh, God’’,then laughed nervously.

. . .When the doctor stated that the patient didnot have AD, he smiled and sat back in hiswheelchair.

The emotional reaction to the diagnosis and itsramifications (including recommendations to ceasedriving, relocate to a supportive living environment,make home adaptations, receive assistance withactivities of daily living, etc.) was at times sopowerful and overwhelming that it interfered withthe cognitive intake of the information disclosed.This was evident in the field notes and transcriptsfrom the disclosure meetings, as well as the follow-up interviews with patients and caregivers. Thefollowing comments made by the caregiversillustrate the point:

It’s a lot of information and let’s face it, it’s painfulinformation. So, you sort of wonder where thebrain shuts down and says ‘‘I can’t take onanymore bad news’’.

When she heard bad things, she just immediatelyjumped to ‘‘oh, they’re going to move me’’.She didn’t hear anything else at that point.

Because of the shock of the results . . . she becameconfused and needed to be explained severaltimes . . . .

During the focus group interviews, some caregiversadmitted that they had initially underestimated theirrelatives’ level of awareness and emotional reaction

Table I. Patient socio-demographic and health profile (N¼ 30).

Characteristic N(%)

Female 20 (67%)Age group:

65–74 3 (10%)75–84 17 (57%)�85 10 (33%)

English mother tongue 24 (80%)Education:

Some high school 6 (20%)Completed high school 11 (37%)Post-secondary or higher 8 (27%)

Caregiver relationship:Spouse 7 (23%)Adult child 20 (67%)Other family 3 (10%)

Living arrangement:Own home 23 (77%)Adult child’s home 3 (10%)Retirement home 4 (13%)

Diagnosis:Probable Alzheimer’s Disease (AD) 11 (37%)Vascular Dementia (VaD) 7 (23%)Mixed AD and VaD 12 (40%)

Mini-Mental Status Examination Score (Range 0–30):Very mild cognitive impairment (>26) 4 (13%)Mild (21–26) 21 (70%)Moderate (15–20) 5 (17%)

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to the diagnosis, because of the lack of apparentsigns of distress in response to the diagnosisdisclosure. These participants only later exhibiteda delayed reaction:

I didn’t think mom understood her diagnosis,there was no reaction at the meeting. But it was,I’d say, a month later that it came out. And wow!I had underestimated how much she understoodand realized that she had been taking it in.

Over-exaggerated response, delayed a coupleof days, and then near hysteria.

In contrast, a small minority of patients (with adiagnosis of AD, vascular or mixed dementia)expressed a sense of relief and validation fromknowing their diagnosis. These patients stated thatthey had been aware of the changes in their memoryand that the diagnosis finally provided them withan explanation for these changes, creating anopportunity for therapeutic interventions:

It’s a horrible feeling for a person who has alwayshad what’s going on at the tip of her fingers, andthen all of sudden, bang, you haven’t got anymemory at all. So, I wanted to know the reasonfor that.

Well, I knew something was wrong with me,but I didn’t know what it was . . . I’m glad thereare things that can help.

Stages of emotional reaction to diagnosis

In the days that followed the disclosure, patientsexhibited a range of emotional reactions to theirdiagnosis which can be classified into three broadcategories:

(a) responses suggesting a lack of insight and/oran active denial in an attempt to restrict theemotional impact of diagnosis;

(b) acute grief reactions/emotional crisis related tothe experience of actual or anticipated lossesassociated with dementia diagnosis; and

(c) positive coping responses to maximize thedisease outcome.

Table II provides a summary of the patients’emotional and coping responses to their diagnosisand some typical comments and behaviors indicativeof each category of reaction.

During the diagnostic period, participants seemedto progress through a sequence of stages of aware-ness and emotional reaction. While some partici-pants noticed the changes in themselves and revealedtheir symptoms by expressing concern and seekinghelp, others showed no apparent awareness of theirsymptoms or actively covered up. One way oranother (of their own initiative or with the encour-agement of their family and/or professional provi-ders), they went through the process of diagnosisand disclosure. The most prevalent immediatereactions to the diagnosis disclosure were eitherone of shock and distress or a sense of relief andconfirmation. In the post-diagnostic period, depend-ing on their appraisal of dementia diagnosis andits impact, participants exhibited a range of emo-tional reactions, here classified in three broadcategories of denial, crisis and maximizing (withsome individuals exhibiting a combination of emo-tions and coping strategies associated with one ormore of these categories at different times during thisperiod). Although beyond the time frame and scopeof this study, the overall coping response to thediagnosis over time could ultimately result eitherin a state of relative adaptation or psychologicaldisorganization leading to ‘excess disability’. Thefollowing comments made by the caregivers duringthe focus group interviews capture some of thesetransitions:

My mom who had initiated the whole processbecause she noticed that she was losingher memory [Noticing Symptom andRevealing] . . .half way through the assessment,she said to me ‘‘oh, I wish I’d never donethis’’ . . . she didn’t realize it was going to be such

Table II. Emotional responses to dementia diagnosis.

Category of response Feelings/Behaviors Illustrative comments

Denial/lack of insight Avoiding use of diagnostic label –Not seeking any information –Minimizing impairment ‘‘I can get along so well’’Attributing cognitive decline to

normal aging‘‘It goes with old age’’

Defensiveness/anger ‘‘They’re all accusations’’Grief reactions/emotional crisis Sorrow/sadness ‘‘Crying and feeling useless’’

Fear/anxiety ‘‘It is really scary. I hope I don’t go that way’’Self-blame/guilt ‘‘I’m so mad at myself’’Passive resignation/nihilism ‘‘It’s going to get worse anyway, there’s nothing I can do about it’’Hopelessness/despair ‘‘In some situations, you’re better dead’’

Positive coping responses Optimism ‘‘I’m glad I went. It gave me positive outlook on my health’’Maximizing ‘‘It’s up to me. There’re ways one can help themselves.

So, get on with it’’

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a diagnosis [Diagnosis Process and Disclosure].It was a shock for her [Shock].She went through first denial [Denial], then panic[Crisis] and then acceptance of her diagnosis[Maximizing] . . .

Table III presents the psychological reactions todementia diagnosis noted in the present study andthe previously proposed longitudinal models ofdementia reaction. Two points should be noted here:

(a) For consistency, and in an attempt to contributeto the development of a consensus model asmuch as possible, we used the terminologyproposed in the previous models.

(b) Contrary to the models presented by Cohen andcolleagues (1984) and Keady and Nolan(1995), which included psychological reactionsto dementia in later stages of disease, the focusof the present study and Pratt and Wilkinson’sstudy (2001) was only on the diagnostic phase.As shown in Table III, the comparison of thefour models reveals overlaps and commonalitiesamong the four models.

Experience of loss and stigma

The powerful emotional reactions of people withdementia to their diagnosis are understandable,considering the multitude of losses associated withdementia. In keeping with previous research (Bahroet al., 1995; Bender & Cheston, 1997; Gwyther,1997; Katsuno, 2005; Pratt & Wilkinson, 2001),throughout the interviews, patients and caregiverspointed to many actual and anticipated losses invarious domains of patients’ lives: loss of autonomy,sense of control, self-esteem, competency, valuedlifestyles, social roles, relationships, etc. But,perhaps one of the most feared losses indementia is the loss of sense of identity. As notedby one patient: ‘it’s your intellect or brain givingup more or less’. The sense of self is largelyinfluenced by how others relate to the person

with dementia. Therefore, social stigma can have apowerful negative impact on the person’s senseof identity (Harman & Clare, 2006). The followingcomments illustrate this point. The first remarksdescribe the feelings of shame and embarrassmentassociated with the fear of stigma attached to thedementia diagnosis. While the second scriptdescribes the powerful feelings of discrimination,devaluation and social exclusion in response to theloss of driving privileges.

– Mother believes its something to feel ashamedof. She doesn’t want people to know.

– This commission was a surprise to me, after-wards I was under suspicion, considered to bedangerous to individual and community . . .Now,what did I do wrong to be put under such aspell . . . for how long should I remain isolatedfrom the community? from everyday life? I don’tknow how to behave or what’s the outcome.

Uncertainty and insecurity

Consistent with past research (Harman & Clare,2006; Pearce et al., 2002), uncertainties associatedwith dementia diagnosis and ‘downgrade expecta-tions’ were noted by many participants. Forinstance, some patients grappled with many ques-tions concerning the certainty and accuracy of thediagnosis. This process was further complicatedby the conflicting messages they received fromimportant key referents in their social network:

– Should I really accept it? Should I say, hey don’tbelieve anything of what I’m hearing, because theycould be off base. And then, a little episode cropsup and I realize I’m off base!

– My mother’s neighbors are all telling hernot to listen to the doctor, ‘‘don’t you dare letthem put you in a home. There’s nothing wrongwith you’’.

Table III. Stages of Emotional experience and reaction to dementia.

Current study Pratt & Wilkinson (2001) Keady & Nolan (1995) Cohen et. al. (1984)

Not noticing symptoms Noticing symptoms Slipping Recognition & concernNoticing & covering up, Suspectingor Noticing & revealing Covering up

RevealingDiagnosis process & disclosure Diagnosis process – –

Diagnosis disclosure

Confirming or shock Confirming Denial

Denial, crisis, or maximizing Crisis Surviving/Maximizing Anger, guilt, & sadnessPrognosisDenial

MaximizingDistress Coping maturation

Disorganization or adaptation – Disorganization Separation from selfDeclineDeath

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Others noted the variations in disease progressionand uncertainties associated with the prognosis ofa dementia illness, often compounding the difficul-ties concerning decision making and future planning:

I just don’t know how to act with it. Likewhat happens, how long . . . I wanna know inanother year, will it be worse or in five yearsfrom now . . .

Another group of participants reacted to the traumaof dementia diagnosis and the associated feelings ofloss and uncertainty, by experiencing an increasedsense of insecurity, emotional dependency andattachment behaviors. The term ‘Velcro-Symptom’(velcro is a nylon fastener that adheres two piecesof clothing) was used by one caregiver during a focusgroup interview to describe this reaction:

– Mother is more child-like. She really wantsme to take on the role of a parent.

– An attempt to have me right here 24 hours a day.Her displeasure goes with the number of inchesI’m away from her.

Discussion

Recent advances in diagnostic accuracy haveresulted in earlier detection of dementia. This hascreated a unique opportunity for:

(a) research to recruit people with dementia early inthe course of disease who are still cabable ofreflecting on and verbalizing their subjectiveexperiences and service needs, and

(b) clinical practice to implement supportive inter-ventions to maximize adaptive coping responsesand quality of life outcomes.

It has been proposed that making a diagnosisof dementia is not just a medical process, but also asocial act which removes the person to a new socialgroup that is highly stigmatized (Husband, 1999).Therefore, people with dementia who learn of theirdiagnosis not only have to cope with the lossesassociated with a disabling and terminal disease,but also have to face the stigma attached to thediagnostic label (Harman & Clare, 2006). Thelimited available empirical research and biographicalaccounts written by people in the early stages of ADreveal the experience of (and/or fear of) shame,discrimination, rejection, social isolation, loss of asense of control, altered self image, apathy andwithdrawal associated with an stigmatized socialidentity (Bender & Cheston, 1997; Bond & Corner,2001; Gwyther, 1997; Harman & Clare, 2006;Husband, 2000; Katsuno, 2005; Poveda, 2003).

The findings of the present study are consistentwith the above observations: the powerful emotionalreactions to the diagnosis of dementia, particularly tothe label AD; the fear of stigma and devaluation;

mourning associated with actual and anticipatedlosses; and a sense of increased vulnerability of self.It has been argued that the emotional and behavioralreactions to the diagnosis of dementia and the threatof destruction of self may have a more significantimpact on the disease outcomes than the actualcognitive changes (Bender & Cheston, 1997;Bryden, 2002). The meaning of dementia, in turn,is profoundly influenced by the reaction of signifi-cant others and the social environment surroundingthe person with dementia (Bond & Corner, 2001).As pointed out by Kitwood (1990), the socialcontext in dementia often constitutes a ‘malignantsocial psychology’ characterized by deception(e.g., not telling the truth about the diagnosis andprognosis), labeling, invalidation, infantalization,intimidation, outpacing, and disempowerment.Such a social milieu puts the person at risk forfalling in a cycle of failure and maladaptive copingresponses. Some of such responses were noted inthe present study: a tactic of defensive denial,psychological crisis, and emotional dependency.

A number of intervention strategies can beimplemented to create a more caring social contextfor people with dementia. First, it is importantto raise public and professional awareness of thechanges associated with dementia illnesses, andthe inner world and subjective experiences ofpeople with dementia in an attempt to dispel themyths and stigmas attached to the disease, and tobe able to empathize with the feelings, thoughts,behaviors of those affected. Moreover, people withdementia need an on-going education and support.Of particular importance are psychotherapeuticinterventions which should ideally begin in thediagnostic phase. As pointed out by Yale (1999),psychotherapy and counseling have been largelyunderutilized due to the prevailing stereotype thatpeople with dementia are incapable of thinking,feeling or communicating. However, with theemergence of a more person-centered philosophyof dementia care, there has been a growing aware-ness of the potential benefits of such interventions(Cheston, 1998).

A recent review article (Cheston, 1998), hasshown promising results of various psychotherapeu-tic interventions with this population: grief therapy,non-directive counseling, supportive psychodynamicpsychotherapy, identity work, cognitive and behav-ioral group therapy, etc. These interventions cancreate a safe environment to explore the subjectivemeaning of illness; develop and articulate anincreased awareness of change; acknowledge theexperience of grief and loss; and maximize adaptivecoping responses in various stages of diseaseprogression (Bender & Cheston, 1997; Burnset al., 2005; Cheston, 1998; Woods, 2001).Moreover, given the centrality of the threat of lossof identity, therapy can help recognize and celebratethe person’s competencies and capabilities, and

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provide opportunities for experiencing growthand strengthening the sense of personhood(Bryden, 2002; Cheston et al., 2003). In addition,group therapy provides a unique opportunity toovercome social isolation; share knowledge, feelingsand experiences; foster the establishment of solidar-ity and helping relationships; and facilitate thegrowth of awareness and coping as a team(Watkins, Cheston, Jones, & Gilliard, 2006; Yale,1999).

When considering the reactions and experiencesof persons with dementia, the issue of awareness andappraisal of the illness becomes of central impor-tance. To date, research on diagnosis awarenessamong people with dementia has yielded inconsis-tent results, largely due to the variability in metho-dology including differences in conceptual andoperational definitions of awareness used acrossstudies (Bamford et al., 2004; Markova, Clare,Wange, Romero, & Kenny 2005). It has beenincreasingly recognized that awareness in dementiashould be viewed as a multi-dimensional and multi-contextual construct resulting from a complexinteraction of many factors, including cognitivefunctioning, individual psychological responses,and the social context (Wood & Pratt, 2005).Denial, often regarded as a lack of insight due tothe neurological deficits, can be, at least partly,a grief response of disbelief and confusion followingthe diagnosis of a terrifying disease (Bryden, 2002;Harman & Clare, 2006). Awareness, therefore,could be influenced by appropriate psychosocialinterventions.

The application of Assimilation of ProblematicExperiences Scale (APES) is useful in interpretingthe stages of emotional reaction to dementiadiagnosis and in guiding clinical interventions(Watkins et al., 2006). According to the model,the diagnosis of dementia is a problematic eventthat needs to be gradually assimilated into theindividual’s existing schemas. Therefore, the goalof clinical interventions should be to help individualsgo through the stages of awareness (and parallelsequence of emotional responses) as the painfulmaterial is approached, the nature of the problemclarified, insight gained and then mastery achieved.Thus, individuals at different stages in this processcould benefit from different forms of interventions.For instance, at earlier stages of assimilation,individuals may benefit from more exploratoryprocesses to help them work through the initialshock, disbelief and denial. While those who havea greater awareness of their diagnosis, may needsupport to deal with the emotional pain. Finally,individuals who have already dealt with the initialdistress of accepting a dementia diagnosis, maybenefit from a wider problem-solving approachaimed at developing a sense of control and masteryof their situation (Watkins et al., 2006).

Therefore, dementia diagnosis disclosure shouldnot be considered a one-off event, but an on-goingprocess of care to help the person develop insightand integrate the progressive decline into theirexisting identity. To transcend the losses anddifficulties encountered in this journey, positiveattitudes and hope are critically important forpeople with dementia. Giving the diagnosis ofdementia is not synonymous with losing all hope(Smith et al., 1998). There is the possibilityof positive psychological states after a dementiadiagnosis: pleasure, humor, creativity, affection,new learning, and even growth (Henderson, 1998).Besides the psychosocial interventions cited above,opportunities to engage in meaningful dailyactivities and to maintain a sense of autonomy,reciprocity in relationships, positive social identify,and connection with the larger community anddivine can help achieve such positive states(Kitwood, 1997; Gwyther, 1997).

The right to hope in the context of a cancerdiagnosis has been the subject of considerable debate(Groopman, 2004). It is about time to bring hopeinto the dementia discourse as well. Dementia isa category of degenerative diseases characterized bygreat variations in clinical manifestations and course.According to Dr. Groopman, it is this very uncer-tainty associated with the chronic illnesses thatcreates an opportunity for hope: ‘This is the paradoxof true hope: because nothing is absolutely deter-mined, there is not only reason to fear, but alsoreason to hope. And so we must find ways to bridlefear and to give greater rein to hope.’ To instill hopein the context of a dementia diagnosis, it is importantto highlight: (a) individual variations in illnessmanifestation and progression; (b) the preservedability of most people with dementia (even in laterstages of disease) to experience positive emotionalstates; (c) the availability of pharmacological andnon-pharmacological treatment and managementoptions that could delay the decline and/or providesolutions to many problems associated with demen-tia; (d) the on-going progress being made indementia research; and finally, (e) the potentialbenefits of psychotherapeutic and social supportservices to assist people with dementia (and theirfamilies) in their journey.

Future research

To our knowledge, this is one of the first qualitativestudies that has explored the emotional impact ofdementia diagnosis prospectively using a triangula-tion of data sources (including the views of peoplewith dementia and their caregivers, as well asrecording and observation of the actual disclosuremeeting). The findings confirm the profound mean-ing of dementia diagnosis, varying levels of apparentawareness, and a range and intensity of emotionalreactions to the diagnosis. The preliminary model

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of the stages of psychological reaction to dementiadiagnosis proposed in this paper (and its interpreta-tion in the context of past longitudinal frameworksand psychotherapeutic models of change) can helpinform supportive interventions in the diagnosticphase.

Clearly more research is needed to further validateand expand the findings. For example, future studiesshould further investigate any differences in thepsychological reaction to, and the meaning ofdiagnosis for various types of dementia. In thepresent study, participants displayed a moreimmediate negative reaction to the diagnosis of ADcompared to vascular dementia. Similarly, in arecent study, all patients with vascular dementiaexpressed favorable views on reading their diagnosiscompared to two thirds of those with AD ( Jha et al.,2001).

Furthermore, more research targeting diverseclient populations and clinical settings would helprefine the stages of emotional reaction to dementiadiagnosis. The manner of diagnosis disclosurecould also affect the person’s emotional reaction(Smith et al., 1998). Future research should explorethe link between different disclosure practices andpatient outcomes. Research is also needed on thecomparative benefits of various psychotherapeuticapproaches in dementia diagnosis counseling.Finally, given the trans-cultural variability in theexperience of dementia, cross-cultural studies areneeded for a wider understanding of thephenomenon.

Acknowledgments

The authors wish to thank the study personnel,Fauzia Gardezi, Erin Pollard and Raewyn Bassett,and the staff of the Ottawa Hospital Civic CampusGeriatric Day Program for their valuable contribu-tion to this study. We also gratefully acknowledgethe assistance of Emmanuel Nkansah in accessingrelevant literature for this paper. The study wasfunded by the Drummond Foundation 2003.

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