the canadian review of - sta healthcare … canadian review of volume 12, number 1 † february 2009...

The Canadian Review ofVolume 12, Number 1 • February 2009

FOCUS ON MANAGEMENT ISSUES AT THEPRIMARY CARE LEVEL

Recognizing and Treating Behavioral andPsychological Symptoms of Dementia 4Peter N. McCracken, MD, FRCPC;Leon Kagan, MD; and Jasneet Parmar, MBBS

Screening for Dementia in Primary Care 8 Paige Moorhouse, MD, MPH, FRCPC

Strategies for Identifying,Assessing, and Supporting Drivers with Dementia 13Bonnie Dobbs, PhD; Henry Zirk, MD, CCFP, FCFP; and Shannon Daly, RN, MN

The Ideal Alzheimer’s Home 22Bernard Viau, BA, MA, Fellow CSI

Boomers Fueling Dementia Crisis 29The Alzheimer Society of Canada

Art by Pat

The Review is online! You can find us at: www.stacommunications.com/adreview.html

CHAIRMANPeter N. McCracken, MD, FRCPCProfessor Emeritus of Medicine, Division of Geriatric MedicineUniversity of Alberta Edmonton, Alberta

Paul J. Coolican, MD, CCFP, FCFP Family Physician, St. Lawrence Medical ClinicMorrisburg, Ontario Active Staff, Winchester District Memorial HospitalWinchester, Ontario

Shannon Daly, RN, MNClinical Nurse Specialist in GeriatricsGrey Nuns Community Hospital and Health CentreEdmonton, Alberta

Serge Gauthier, MD, CM, FRCPCProfessor of Neurology and Neurosurgery, Psychiatry and Medicine, McGill UniversityMcGill Centre for Studies in AgingMontreal, Quebec

Bernard Groulx, MD, CM, FRCPC Chief Psychiatrist, Ste-Anne-de-BellevueHospitalAssociate Professor, McGill UniversityMcGill Centre for Studies in AgingMontreal, Quebec

Nathan Herrmann, MD, FRCPCProfessor, University of TorontoHead of the Division of Geriatric Psychiatry, Sunnybrook Health Science CentreToronto, Ontario

Peter J. Lin, MD, CCFPPast Medical Director, University of TorontoHealth & Wellness Centre at ScarboroughDirector, Primary Care Initiatives,Canadian Heart Research CentreMedical Director, LinCorp Medical Inc.Toronto, Ontario

Kenneth Rockwood, MD, MPA, FRCPCProfessor of Geriatric and Neurology Medicine,Kathryn Allen Weldon ChairProfessor in Alzheimer Research,Dalhousie UniversityDirector, Canadian Dementia KnowledgeTranslation NetworkHalifax, Nova Scotia

Copyright 2009 STA HealthCare Communications Inc. All rights reserved. The Canadian Review of Alzheimer’s Disease and Other Dementias is published by STACommunications Inc. The opinions expressed herein are those of the authors and do not necessarily reflect the views of the publisher. Physicians should take intoaccount the patient’s individual condition and consult officially approved product monographs before making any diagnosis or treatment, or following any procedurebased on suggestions made in this document. Publications Agreement Number 40063348.

Publishing Staff

Editorial Board

On the Cover…

Patricia, an African American, was born in 1938, and grew up in Lexington, Kentucky. Aftergraduation from Paducah College, she worked as a secretary, dental lab assistant andschool assistant; she loved people and travel, and became involved in civil rights for AfricanAmericans. She was diagnosed with Frontotemporal Dementia in 2005, and now resides ina care facility. Dr. Dalia Gottlieb-Tanaka noticed her artwork at the Best Friends Centre inLexington, and selected it for the Mindscape 2008 art exhibit. Patricia’s very distinctiveartwork features numerous detailed, identically repeated images; she does not use anycopying techniques. Her symptom of preservation in the visual arts may also appear inverbal, sound and behaviour in others seniors with dementia. In Patricia’s work, we sensethe enjoyment of the moment in creating something that comes from the heart. Patriciadraws on an assortment of papers, mainly 8-1/2”x11,” using pencils and watercolors.

The editorial board has complete independence in reviewing the articles appearing in this publication and is responsible for their accuracy. The advertisers exert noinfluence on the selection or the content of material published.

Paul F. BrandExecutive Editor

Russell KrackovitchEditorial Director, Custom Division

Mandi WatsonManaging Editor

Catherine de GrandmontEditor-proofreader, French

Donna GrahamProduction Manager

Dan OldfieldDesign Director

Jennifer BrennanFinancial Services

Sherri TobinAdministrative Assistant

Robert E. PassarettiPublisher

2 • The Canadian Review of Alzheimer’s Disease and Other Dementias

The Canadian Review of

Photograph by Dalia Gottlieb-Tanaka, PhDChair of The Society for the Arts in Dementia Care

E D I T O R I A L

Realistic Approaches to Alzheimer’sDisease in Clinical PracticeBy Serge Gauthier, MD, CM, FRCPC

The Canadian Review of Alzheimer’s Disease and Other Dementias • 3

This issue of The Canadian Review of Alzheimer’sDisease and Other Dementias aims to help pri-

mary-care physicians with three sets of issues oftenencountered in geriatric practice:1. How far to go in the workup of elderly persons at

risk of cognitive decline with no symptoms orwith minimal complaints;

2. How to manage the expected loss of instrumentalabilities (i.e., driving ability), once cognitiveimpairment has been recognized and an etiologyestablished as Alzheimer’s disease; and

3. In a later stage of Alzheimer’s disease, how tomanage the different behaviors that emerge, without prescribing neuroleptics. The last article is an optimistic view of how hous-

ing designed for persons with Alzheimer’s diseasemay look like in the future.

Overall the articles in this issue present realisticapproaches to what Alzheimer’s disease is like in clin-ical practice in Canada: detection of early symptoms,diagnosis and follow-up to anticipate loss of autono-my for complex tasks, monitoring for (and treating)emerging behaviors, and offering the best housingavailable if patients cannot stay home safely.

It should be noted that the authors make use of therecommendations from the Third CanadianConsensus Conference on the Diagnosis andTreatment of Dementia (CCCDTD3), which has beendesigned by primary-care physicians and specialists.This joint approach is one of the strengths of carefor patients with Alzheimer’s disease in Canada.Readers interested in the CCCDTD3 recommenda-tions can take advantage of a series of short articleswith case studies published in the CanadianMedical Association Journal throughout last year,the last one being on the topic of management ofsevere dementia.1

I would like to take this opportunity to thank Dr. PeterMcCracken for his leadership as Editor-in-Chief ofThe Canadian Review of Alzheimer’s Disease andOther Dementias. His qualities as a caring clinicianare obvious in the way he describes a humanisticapproach to patients with Alzheimer’s disease andtheir caregivers in this issue’s lead article. Merci deton exemple Peter!

Further reading:1. Herrmann N, Gauthier S. Diagnosis and treatment of demen-

tia: 6. Management of severe Alzheimer disease. CMAJ 2008;179(12):1279-87.

Recognizing and Treating Behavioraland Psychological Symptoms ofDementia

Of the many challenges forcaregivers of patients with

dementia (PWD), unquestionablythe most difficult are behavioraldisturbances.1,2 These symptomscan include agitation, restlessness,depressive behaviors, wandering,difficulties with activities of dailyliving, sleep problems, delusionsand hallucinations.3,4 Such symp-toms are further exacerbated by thecognitive and memory deficits so

characteristic of dementia, oftenleaving the PWD unable to initiateand sustain meaningful behavior.The deteriorating scenario is one ofinactivity, boredom, and restless-ness in the patient and extremedemands—physical and emotional—on the caregiver.

As this issue of the Reviewfocuses on practical management, auseful way to regard behavioral andpsychological symptoms of demen-tia (BPSD) is to think of the fiveneuropsychiatric clusters: aggres-sion, agitation, psychosis, depres-sion and apathy (Table 1).

The importance of BPSD is refer-able to the excess disability, increasedhospitalization, premature institution-alization, and suffering for the patientand caregiver. BPSDs can be viewedas an interaction of biological andpsychosocial factors.

Neurodegenerative changes con-tribute as well as deficiencies ofsuch neurotransmitters as acetyl-choline, serotonin, and norepineph-rine, which each play a role.

The symptom complex is seen inall settings that house PWD, includ-ing acute and long-term-care hospi-tals, nursing homes and grouphomes. A paucity of staff trainedproperly to deal with such complexseniors heightens the distress expe-rienced in these environments dur-ing difficult periods of time. Suchfacilities have increased consider-ably in number in many countries inrecent years and may not always besuitable for the challenges presentedby behaviorally disturbed individuals.

Some observers feel that thefocus on BPSD is over-drama-tized. But, when one surveysmeticulously the gamut of prob-lem behaviors comprising BPSD,it becomes apparent why thesesituations stir such anxiety inpatients, family members, andcare staff. Table 2 describes theseindividual aberrancies.5

Treating BPSDs: Initial StepsWhen confronted with such diffi-culties in BPSDs, the basic objec-


Jasneet Parmar, MBBSCare of the Elderly DiplomaUniversity of Alberta Edmonton, Alberta

Leon Kagan, MDProfessor of PsychiatryUniversity of Alberta Edmonton, Alberta

Peter N. McCracken, MD, FRCPCProfessor Emeritus of Medicine, Division of Geriatric MedicineUniversity of Alberta Edmonton, Alberta

Management Issues in Primary Care

Behavioral disturbances are unquestionably the most difficult challenges faced by caregiversof patients with dementia. Such disturbances manifest as a wide range of symptoms, someof which respond to pharmacologic treatment and some of which do not. A careful andfocused approach to managing these symptoms can yield significant advantages for patientsand caregivers.

Peter N. McCracken, MD, FRCPC; Leon Kagan, MD; and Jasneet Parmar, MBBS


tives of therapy are to maximizefunctional independence and quali-ty of life in the patient, and to min-imize caregiver stress and distresswhile improving their ability tocope with and care for the patient.Initial steps will include reducingenvironmental over-stimulation andconsidering physical interventionssuch as “stop” signs, a change ofroommates, color-coding on walls,and a specific tone of voice (lowand slow). One-step instructions, afive-second delay between a verbalprompt and physical assistance, andleaving and approaching again (asnecessary) at 30-minute intervalsalso can help. Exercise programsand structured activities to reducepurposeless motor activity, andother resources for those still livingat home (such as day-center pro-grams) can be very useful.

When faced with an agitatedpatient with BPSDs, suggestedsteps are to review the possiblephysical causes and then go overthe medication list. There needs tobe a search for contributing envi-ronmental factors and considerationof psychiatric diagnoses (i.e.,depression, anxiety, etc.). It can beuseful to focus on one target behav-ior, and reserve certain medicationsfor times when the safety or well-being of the patient (or of others) isat risk. Behavior and environmentalapproaches are always first-linetherapies, particularly when symp-toms are not severe, with the phar-macologic approach to follow.

Physicians and other healthcarestaff should be aware of the effec-tiveness of non-pharmacologicinterventions (Table 3) as they havebeen well-summarized in two past

articles.6,7 This approach to behav-ioral management includes a cogni-tive assessment, a behavioral evalu-ation (ABC analysis), staff percep-tions, the utilization of extinction,reinforcement, and prompting andstaff stress inoculation.

The possible etiologies of agita-tion and aggression may be refer-able to the caregiver or environ-ment, and can be manifestations ofa medical disorder (associated withits pain or discomfort). Delirium ora psychiatric comorbidity might beinvolved. Other etiologies includemedication side-effects or neuro-transmitter changes.

Antipsychotic Medications forBPSDsThe management of BPSDs has notbeen standardized and currentlyentails various non-pharmacologic


Behavioral Symptoms

Table 1

Five NeuropsychiatricClusters

1. Aggression

• Aggressive resistance, verbalor physical aggression.

2. Agitation

• Walking aimlessly, pacing,trailing, restlessness,repetitive actions,dressing/undressing, sleep disturbances.

3. Psychosis

• Hallucinations, delusions,misidentifications.

4. Depression

• Sad, tearful, hopeless, lowself esteem, anxiety, guilt.

5. Apathy

• Withdrawn, amotivational,loss of interest.

Table 2

Common Behaviors in Patients with BPSD5

1. Delusions of theft, spouse an imposter, house not my home, infidelity, abandonment.

2. Fabrication.

3. Hallucinations.

4. Changeable mood (depression,anxiety).

5. Sleep disturbances.

6. Verbal and non-verbal abuse.

7. Repeated questions or stories.

8. Agitation.

9. Aggression.

8. Screaming.

9. Resistance to care.

10. Wandering.

11. Restlessness, pacing.

12. Requests/demands to go home.

13. Hoarding useless things.

14. Destroying property.

15. Poor hygiene.

16. Anxiety and depression.

17. Inappropriate sexual behavior.

18. Compulsive traits.

20. Apathy.

21. Particularly repetitive questions.

22. Appetite changes.

22. Urinary incontinence.

23. Fecal incontinence.

24. Reluctance to contact others.

25. Monology.

26. Self-mutilation.

27. Falls, with/without gait changes.

28. Obsession with loneliness.

and pharmacologic approaches. Formany years, typical antipsychotics(neuroleptics) were the most com-mon pharmacologic treatment forBPSD, but now the atypical antipsy-chotics have been widely adopted asthey have been perceived to havesuperior efficacy and safety com-pared to the typicals. Like to the typ-ical antipsychotics, the atypicalsblock D2 receptors but also antago-nize serotonin receptors such as 5HT.Depending on the specific drug,there can also be effects on mus-carinic, alpha-adrenergic or hista-minic receptors. The results of block-ing these receptors include anti-cholinergic effects, such as orthostat-ic hypotension and sedation.10

Prudent use of psychotropicmedication requires a skilled clini-cal assessment, careful considera-tion of risks and benefits, and anevidence-based approach.Questions to pose before starting adrug are:• What is the target problem?• Is the drug truly necessary?

• Are non-pharmacologic optionsavailable?

• Is this the lowest possible dose?• Could discontinuation of a drug

be more helpful?• Does this drug have adverse

events likely to occur in olderpatients?

• Is this the most cost-effectivechoice?

• By what criteria and by whattime will the effect of this drugbe assessed?11

Assessment scales can serve asoutcome measures to evaluate theeffect of an intervention. Num eroustools are available, and have beenwell described.12 Investi gators whorequire a comprehensive instrumentto measure neuropsychiatric symp-toms in PWD should consider usingthe neuropsychiatric inventory(NPI) rating scale,13 the behaviorpathology in Alzheimer’s disease(BEHAVE-AD) rating scale,14 andthe Cohen-Mansfield Agi tationInventory (CMAI) scale to rate agi-tation.15 These reliable and validat-ed scales are commonly used toassess BPSD, although becausethere is no consensus on which isbest, different trials have used dif-ferent outcome measures.16

There is a range of drug choices,depending on the exact details of theBPSD(s) involved. Pharma cologicagents include antipsychotics, anti-depressants, mood stabilizers,cholinesterase inhi bitors and hor-mone treatments. Before consideringchoice of agent, however, it is impor-tant to be aware of those behaviorsthat do not respond to pharmacolog-ic treatment. Medication use can befutile for wandering, attempting to

leave, disruptive vocalization, orvoiding in inappropriate places. Mostrecent published guidelines, includ-ing those from the Third CanadianConsensus Conference, recommendthat atypical antipsychotics are thedrugs of choice to follow implemen-tation of environmental measures.This article focuses on that group ofmedications, although other classes(as listed above) can also be useful insome clinical situations. The atypicalantipsychotic drug choices include:risperidone, olanzapine, quetiapine,clozapine, aripiprazole (not availablein Canada), amisulpride (not avail-able in Canada) and ziprasidone.

The adverse effects of thesecompounds can include extrapyra-midal symptoms (EPS; i.e., tardivedyskinesias, Parkinsonism, etc.),sensitivity to postural hypotension,cardiac arrythmias, somnolence,and metabolic side effects involvingserum glucose and lipid levels. Katzshowed a dose-dependent increasein EPS in a study involving patientswith schizophrenia and schizoaffec-tive disorders using risperidone.17

One must remember that numerouselderly patients have at least oneserious comorbid illness.

There are a number of advantagesto utilizing these compounds in thefrail elderly. When compared to thetypical antipsychotics, they arebelieved to have equivalent efficacyfor positive symptoms but generallybetter efficacy for negative symp-toms. They clearly have a lower inci-dence of EPS and temporary disabil-ity (TD), fewer anticholinergiceffects, a favorable safety profile,lower potential for liver dysfunctionand drug interactions, less or no



Table 3

Non-pharmacologicInterventions for BPSD9

• Behavioral techniques, stafftraining.

• Environmental modifications.• Group programs (exercise,

dancing).• Light therapy.• Music therapy.• Social interaction/

psychosocial activities.• Multimodal approaches.• Pet therapy.• Aroma therapy.

induction of prolactin and, finally,better compliance and less relapse.

Of the four available atypicalantipsychotics, only risperidone iscurrently approved in Canada forthe treatment of BPSD. Further -more, in the U.K. and the U.S. thetreatment of BPSD is not listed asan indication for any atypicalantipsychotic drug.18 It has evolvedthat, in long-term care settings, arisperidone dose of 1 mg/day is fre-quently optimal for balancing effi-cacy with side effects.19

Risperidone has been the mostextensively studied of the atypicals(usually against placebo), becom-ing the most widely prescribedatypical agent and now in wideclinical use for the elderly. Therehave been preliminary suggestionsof a positive cognitive benefit insome subjects.19

Olanzapine has also become avery useful agent in BPSDs. It hassignificant sedative effects and isuseful in agitated seniors with psy-chosis. Studies have shown its effi-cacy at the 5 mg and 10 mg dosesbut not at 15 mg.20 This same studyshowed significant improvement oncombined agitation, delusions andhallucinations on the nursing-homeversion of the NPI. The EPS ratewas similar to placebo but there wasa higher rate of somnolence andgait disorders. Quetiapine hasearned itself solid recognition as anatypical antipsychotic but hasundergone fewer studies, particular-ly in the frail elderly. In one studyby Norris,19 it showed improvementin the BPRS and CGI-S scales withadverse effects of somnolence

(32%) less dizziness (14%), postur-al hypotension (13%), agitation(11%,) and constipation (6%).

There have been no large head-to-head studies involving these com-pounds, although the ClinicalAntipsychotic Trials of InterventionEffectiveness (CATIE) programholds great interest for most clini-cians: it involves outpatient-depart-ment (OPD) patients, and is the firstplacebo-controlled head-to-headstudy involving three atypicalantipsychotics and placebo. Thereare 45 sites, 421 subjects, and a grantof $16.9 million over 3.5 years. The

Phase 1 outcomes are now avail-able.21 Greater improvement wasseen with olanzepine vs. risperidoneon the NPI total score, with risperi-done on the CGI-C, and witholanzepine and risperidone on theBPRS-hostile suspiciousness factor.Risperidone showed improvementon the BPRS-psychosis factor.Regrettably, in patients continuingPhase 1 treatment at 12 weeks, therewas no improvement vs. placebo interms of cognition, function, or qual-ity of life. Furthermore, any benefitswere offset by simultaneous adverseevents.21 These results must beregarded as disappointing.

Mention must be made of theU.S. FDA warning in April 2005 thatpointed out the increased mortality inplacebo-controlled trials involvingthe atypicals risperidone and olanza-pine. In these studies, the mortalityrate—as well as the risk of cere-brovascular accident (CVA)—wasincreased in the treatment groups.Schneider pointed out specificallythat atypicals vs. placebo had showna 1.5-fold increase in mortality(3.5% vs. 2.3%), that haloperidolvs. placebo heightened mortalityby 2.1%, and that conventionalantipsychotics vs. atypicals in -

creased the mortality rate by1.4%.22 After much further discus-sion, one expressed opinionappears to be the prudent: “Theresults do not contraindicate theuse of antipsychotic drugs in thetreatment of patients with demen-tia who have psychotic symptomsand agitation. Instead they changeonly the risk-benefit analysis.”22

ConclusionIt appears obvious that furtherstrides must be made for the clini-cian to feel confident in dealingwith such a complex subset ofbehavioral disorders in BPSDs.

Behavioral Symptoms

The management of BPSDs has not been standardizedand currently entails various non-pharmacologic and

pharmacologic approaches.

Prudent use of psychotropic medication requires a skilledclinical assessment, careful consideration of risks and

benefits, and an evidence-based approach.


References:1. Aneshensel CS, Pearlin LI, Levy-Storms

L, et al. The transition from home tonursing home mortality among peoplewith dementia. J Gerontol B PsycholSci Soc Sci 2000; 55(3):S152-S162.

2. Pruchno RA, Resch N. Mental health ofcaregiving spouses: coping asmediator, moderator, or main effect?Psychology and Aging 1989; 4(4):454-63.

3. Auer S, Reisberg B. The GDS/FASTstaging system. Int Psychogeriatr 1997;9(Suppl 1):167-71.

4. Cohen-Mansfield J, Libin. A Verbal andphysical non-aggressive agitatedbehaviors in (elderly persons withdementia). J Psychiatr Res 2005;39(32):325-32.

5. McShane R. What are the syndromesof behavioral and psychologicalSymptoms of Dementia? IntPsychogeriatr 2000; 12 (Suppl 1):147-53.

6. Opie J, Rosewarne R, O’Connor DW.The efficacy of psychosocialapproaches to behavioral disorders indementia: a systematic literaturereview. Aust NZJ Psychiatry 1999;33(6):789-99.

7. Cohen-Mansfield J. Non-pharmacologic interventions forinappropriate behaviors in dementia: areview, summary, and critique. Am JGeriatr Psychiatry 2001; 9(4):361-81.

8. Conn DK, Hermann N, Kaye A, et al.Practical psychiatry in the long-term

care facility: a handbook for staff.Chapter 11. Hogrefe and Huber,Seattle, Toronto.

9. Beck CK, Shue VM. Interventions fortreating disruptive behavior indemented elderly people. Nurs ClinBorth Amer 1994; 29(1):143-5

10. Lee PE, Gill SS, Freedman M, et al.Atypical antipsychotic drugs in thetreatment of behavioral andpsychological symptoms of dementia.BMJ 2004; 329(7457):75.

11. Avorn J, Gurwitz JH Ann. Int Med1995; 123:195-204

12. Conn D, Thorpe L. Assessment ofbehavioral and psychologicalsymptoms associated with dementia.Can J Neurol Sci 2007; 34(Suppl1):567-71.

13. Cumming JL, Mega M, Gray K,Rosenberg-Thompson S, Carusi DA,Gombein J. The NeuropsychiatricInventory: comprehensive assessmentof psychopathology in dementia.Neurology 1994; 44(12):2308-14.

14. DeDynn PP, Rabheru K, Rasmussen A,et al. A randomized trial of risperidone,placebo and haloperidol for behavioralsymptoms of dementia. Neurology1999; 53:946-55.

15. Cohen-Mansfield J. Agitated behaviorsin the elderly. Preliminary results in thecognitively deteriorated. JAGS 1986;34(10):722-7.

16. Lee PE, Gill SS, Freedman M, et al..Atypical antipsychotic drugs in thetreatment of behavioral and

psychological symptoms of dementia:systematic review. BMJ 2004; 329-35.

17. Katz IR, Jeste DV, Mintzer JE, et al.Comparison of risperidone andplacebo for psychosis and behavioraldisturbances associated with dementia:A randomized double-blind trial. J ClinPsychiatry 1999; 60(2):107-15.

18. British Medical Association, RoyalPharmaceutical Society, Britain, Britishnational Formulary, BMA, RPS2004:179-89, No 47.

19. Keefe RSE, Bollini AM, Silva SC. Donovel antipsychotics improvecognition? A report of a meta-analysispsychiatric annals 29: November 1999.

20. Street JS. Olanzapine treatment ofpsychotic and behavioral symptoms inpatients with Alzheimer’s disease innursing facilities: a double-blind,randomized placebo-controlled trial.The HEGO Study Group. Arch GenPsychiatry 2007; 10:968-76.

21. Sultzer DL, Davis SM, Tariot PN, et al.Effectiveness of atypical antipsychotics(the CATIE AD study group) clinicalsymptom responses to atypicalantipsychotic medications inAlzheimer’s disease: Phase 1 outcomesfrom the CATIE AD Effectiveness Trial.Am J Psychiatry 2008; 165: 844-54.

22. Schneider LS, Tariot PS, Dagerman K,et al. Effectiveness of atypicalantipsychotic drugs in patients withAlzheimer’s disease. N Engl J Med2006; 15(355):1575-78.

7.1 • The Canadian Review of Alzheimer’s Disease and Other Dementias



Dementia is an important publichealth problem, though more

than half of all dementia cases maygo undiagnosed in primary-care set-tings.1 Screening is one strategy toincrease detection and diagnosis ofdementia in primary care, but only24% of Canadian primary-carephysicians routinely screen fordementia.2 Multiple barriers toscreening have been identified, themost ubiquitous being “tyranny ofthe urgent.” Most primary carephysicians identify difficulty imple-menting routine screening into a fee-for-service office visit. Screening fordementia has additional challengesin that people with dementia maynot recognize or mention deficits, ormay ascribe cognitive changes tonormal aging. Family members maynotice deficits but often do notaccompany the affected individual to

appointments. Finally, physicianswho are skeptical about the benefitsof treatment for dementia may notperceive benefit to early diagnosisand may believe that some patientscould be harmed.3

Such barriers are important con-siderations when planning imple-mentation of a screening program,however, application of the WorldHealth Organization (WHO) criteria4

for optimal screening conditions(Table 1) for use in screening fordementia in primary care reveals thatchallenges extend beyond practicalconsiderations to more fundamentalissues.

Importance As a Public HealthIssueDementia clearly satisfies the WHOcriterion that the condition be animportant public health issue. Itaffects about 8% of the population atage 65 and prevalence roughly dou-bles every five years thereafter toreach about 58% in those older than95 years.5 The prevalence of cogni-tive impairment that does not meetthe criteria for dementia (including

mild cognitive impairment [MCI]) isconsiderably higher. Annual per-per-son formal and informal care costsmay total more than $50,000.6

Challenges Surrounding theNatural History of DementiaScreening is most appropriate whenthe natural history of a disease iswell understood and a presympto-matic stage of this disease is readilyrecognizable. It has long been recog-nized that cognitive deficits precedediagnosis by several years. MCI hasemerged as the most widely accept-ed construct for pre-clinical demen-tia, with an annual rate of conversionto dementia of approximately 12%.7

MCI is characterized by self-report-ed memory complaints (preferablywith congruent collateral history),cognitive performance below age-adjusted mean on cognitive testing,ability to carry out most instrumen-tal activities of daily living, andabsence of dementia. Variability inthe rate of progression from MCIand cognitive impairment that doesnot meet the criteria for dementia(cognitive impairment, no dementia

Screening for Dementia in Primary CareMore than half of all dementia cases may go undiagnosed in primary-care settings, which iswhy despite uncertainties that exist in the natural history of pre-clinical dementia and limitedsymptomatic benefits associated with pharmacotherapeutic options for dementia, it is importantthat screening for dementia in those with risk factors remains an important component ofclinical care.

By Paige Moorhouse, MD, MPH, FRCPC

Paige Moorhouse, MD, MPH,FRCPCAttending GeriatricianCapital District Health AuthorityAssistant Professor of MedicineDalhousie University,Halifax, Nova Scotia



[CIND]) to dementia is well-recog-nized, and a significant proportion ofcases may revert to normal cogni-tion. This may be due to the fact thatsome patients satisfy the criteria forMCI due to other comorbidities suchas depression, substance abuse, oradverse drug reactions.

In addition to the uncertaintywith regards to the clinical profileand progression of pre-dementia, itis not currently clear whether earlydiagnosis of dementia is associatedwith better outcomes for patientsand caregivers. Although there issome evidence that patients wish tobe informed of a dementia diagno-sis,8 so far, no studies have foundpsychological benefit to patients andcaregivers from early detection.9

Other studies suggest that earlydiagnosis may actually cause harmby labeling patients. The ThirdCanadian Consensus Conference onthe Diagnosis and Treatment ofDementia (CCCDTD3) guidelinesstate that “there is inadequate evi-dence to recommend that physiciansadvise their patients with MCI thatthey are already showing signs ofdementia, or to treat MCI as equiva-lent to dementia.”10

Challenges Related toTreatment Part of the controversy associatedwith early diagnosis of dementiastems from the fact that there are cur-rently no disease-modifying thera-pies. Although cholinesteraseinhibitors have shown modest symp-tomatic benefits in the domains ofcognition, function, and behavior,these benefits at best delay decline byless than 12 months and have not

shown consistent delay in institution-alization.11 Similarly, cholinesteraseinhibitors and cognitive rehabilita-tion have not shown consistent bene-fit in MCI. Although this argumentmay justify not screening for MCI,

many of the sequelae of dementia aretreatable or preventable and this mayjustify screening even if treatment forthe dementia has not shown benefitotherwise.12

Non-pharmacologic interven-tions for dementia such as outpatientmulti-disciplinary assessment andeducation for caregivers, have beenassociated with delay in institution-alization, improvement in caregiversatisfaction, and reduction in care-giver stress.13 Education for patientsand caregivers may include safetymonitoring with respect to driving

and appliance use, and strategies forcoping with behavioral symptoms.Early diagnosis promotes timelydecision-making for advance direc-tives and legal planning. Researchsuggests that even in MCI, patients’

ability to participate in the informedconsent process is compromised,and this ability declines at an evengreater rate once dementia begins.14

Screening for dementia may pro-mote investigation and treatment forthe reversible dementias (includingmetabolic disease, normal pressurehydrocephalus, depression, andadverse drug effects), although theseare comparatively rare as the solecause of the clinical presentation.15

Finally, a diagnosis of dementiashould prompt a change in how theprimary-care physician approaches

Table 1

WHO Guidelines for Screening Programs4

1. The disease should be an imporant public health problem.

2. There should be a recognizable latent or presymptomatic stage of thedisease.

3. The natural history of the disease should be adequately understood.

4. There should be a treatment for the condition. Treatment should be morebeneficial when applied at the presymptomatic phase compared with thelater symptomatic stage.

5. There should be a test or examination to detect the condition withreasonable sensitivity and specificity.

6. The test should be acceptable to the population.

7. The healthcare system should have the capacity and policies in place totest for the condition and deal with the consequences.

Screening for dementia may promote investigation andtreatment for the reversible dementias (metabolic disease,

normal pressure hydrocephalus, depression, and adversedrug effects), although these are comparatively rare as the

sole cause of the clinical presentation.


Screening

evaluation and treatment of othercomorbidities, in particular vascularrisk factors. Current guidelines statethat vascular risk factors “should bescreened for and treated optimally inMCI.”10 Treatment of systolic hyper-tension (> 160 mmHg) for reductionof stroke and reduction in incidenceof dementia is also recommended.Although there is insufficient evi-dence to recommend acetylsalicylicacid (ASA) and statins as primaryprevention strategies, these drugsremain important in the prevention ofstroke, which is a risk factor fordementia. In more general terms, adiagnosis of dementia should promptthe physician to carefully consider

whether a caregiver or other inform-ant should participate in assessmentand provision of health informationand medication instructions.

Challenges SurroundingResourcesA further consideration is whetherour healthcare system has the capac-ity to deal with the consequences ofa screening program, which coulddouble the number of cases diag-nosed in primary care.16 Cost-effec-tiveness of population screening pro-grams for dementia have not beenevaluated, but, given the absence ofdisease-modifying treatment, andpotential for increased costs associat-

ed with office visits, the duration ofmedication,6 and use of healthcareresources,9 screening for dementia isunlikely to be cost-effective.

The Bottom LineThe WHO guidelines for screeningtests suggest that there are argumentsfor and against screening programsfor dementia. Current Canadian, U.S.,and U.K. guidelines do not advocatescreening for dementia as part of theroutine clinical evaluation in thosewithout symptoms, but instead rec-ommend screening those with riskfactors for the disease. This is alsoreferred to as targeted screening orcase finding. The question becomeswhich tools are most useful fordementia screening in primary care?

The Features of a UsefulScreening TestTable 2 summarizes the features ofscreening tests. The mini-mentalstate examination (MMSE)17 is cur-

Table 2

Features of a Screening Test

Pyschometric Properties Sensitivity What proportion of the time does a negative test result rule out the presence of disease?

Specificity What proportion of the time does a positive test result rule in the presence of disease?

Positive predictive value (PPV) How well do the test results predict the presence orNegative predictive value (NPV) absence of disease in individuals?

Feasibility Acceptability How efficient is the test?Are the items on the test acceptable to patients?

Judgment required Can the test be interpreted by non-physicians?

Cost What is the cost of the time and staffing required to administer the test?

What is the cost of the work-up resulting from a positive test result?

Range of Applicability Robustness Is the test vulnerable to cultural, language or education bias?

Most primary care physicians spend less than 11 minutesper consultation, so screening tests requiring five minutesor less are most feasible.18 Screening tests that can beperformed and interpreted by other members of thehealthcare team may further improve feasibility throughreduced time and staffing costs.



rently the most commonly usedcognitive screen, and thus providesa meterstick against which to evalu-ate other screening tests. Sensitivityand specificity describe what pro-portion of individuals will be cor-rectly classified by the test at thepopulation level. A good screeningtest should have a misclassificationrate equal to or less than theMMSE. Predictive value refers tothe probability of the presence (pos-itive predictive value [PPV]) orabsence (negative predictive value[NPV]) of disease in an individualaccording to the screening testresult. Predictive value depends onthe prevalence of the disease in thepopulation. This makes it difficult tocompare PPV results between studies,however, clinicians can increase thePPV of any screening test by screen-ing only those who are at high risk ofdementia (i.e., patients with advancedage, a family history of dementia,

prior stroke or head injury, vascularrisk factors, lower education, or ahistory of excessive alcohol con-sumption).

Most primary-care physiciansspend less than 11 minutes per con-sultation, so screening tests requir-ing five minutes or less are most fea-sible.18 Screening tests that can beperformed and interpreted by othermembers of the healthcare team mayfurther improve feasibility throughreduced time and staffing costs.Finally, screening tests for dementiamust be resistant to the effects of loweducation, and language and culturaldiversity within the population.

Three Screening Tests YouShould Know AboutThree well-conducted systematicreviews have compared the proper-ties of a multitude of screening testsfor dementia. The first review19

compared tests taking 10 minutes or

less that had been studied in com-munity care settings. This reviewfound that three tests, the GeneralPractitioner Assessment ofCognition (GPCOG),20 the MemoryImpairment Screen (MIS),21 and theMini Cognitive AssessmentInstrument (Mini-Cog)22 were mostvalid and best suited to primary-careapplications. A subsequent review18

also recommended these three testsafter comparing the validity and fea-sibility of 16 screening instrumentsfor primary-care physicians, becausethey could each be administered infive minutes or less, had sensitivityand specificity rates > 80%, andlower misclassification rates than theMMSE. Most recently, 11 of themost commonly used cognitivescreening instruments were com-pared using a rating scale thatincluded assessment of feasibility,practicality, and range of applicabil-ity in addition to standard psycho-

Table 3

Comparison of Screening Tests for Dementia

Test Time Sensitivity Specificity Considerations(minutes) (95% CI) (95% CI)

MMSE 10 0.69 0.89 • Extensively studied(0.66 – 0.73) (0.87 – 0.92) • Difficult to interpret because no clear

consensus on cut-off scores• Susceptible to age, education, cultural biases

GPCOG 4 0.85 0.86 • Informant and patient items(0.76 – 0.92) (0.81 – 0.91) • Shows educational bias

• Has not been evaluated for language or cultural bias

MIS 5 0.80 0.96 • Does not show educational or language bias(0.66 – 0.90) (0.94 – 0.98) • Has been evaluated in a telephone format

Mini-Cog 2-4 0.76 0.80 • Less affected by education, language or (0.65 – 0.85) (0.87 – 0.91) culture compared with the MMSE

• May not have been administered in its suggested form in validation studies


Screening

metric properties.23 This reviewcame to the same conclusion (theMIS, Mini-Cog, and GPCOG scoredhighest). The properties of each ofthese three tests (and the MMSE) aresummarized in Table 3, and a briefdescription of each follows. Table 4describes situations (based on rec-ommendations from systematicreviews) in which one screening testmight be preferred over another.

The GPCOG was specificallydesigned for primary-care settingsand includes a six-item patient test(orientation, clock drawing, recall ofrecent events and free recall) and asix-item informant interview thatasks about the patient’s short-termmemory, word-finding ability, andinstrumental activities of daily living.

The MIS consists of a four-item,delayed free and cued recall item thatuses controlled learning (a memoriza-tion task that requires the patient toidentify a to-be-remembered item inresponse to its category cue; i.e., ani-

mal, city, vegetable, and musicalinstrument). It is free for research use,but licensed for commercial use.

The Mini-Cog consists of athree-item registration task, fol-lowed by a scored clock-drawingtest, and then delayed three-itemrecall. The authors suggest that thistest may be more sensitive to cogni-tive impairment involving executivedysfunction than simple memorytests. Adding the FunctionalAssessment Questionnaire (FAQ), a30-item questionnaire completedby an informant to the Mini-cog,may increase its sensitivity to 89%and allow test scores discriminatebetween those with no cognitiveimpairment (NCI) and those withMCI or dementia.

The MMSE is a 20-item scalethat measures orientation to timeand place, immediate recall, short-term memory, calculation, languageand constructive ability. TheMMSE shows good reliability, but

sensitivity is longer when used inprimary-care settings.

The Montreal CognitiveAssessment (MoCA)24 was devel-oped as a quick screening tool forcognitive impairment, assessingattention and concentration, execu-tive function, memory, language,visuoconstructional skills, conceptu-al thinking, calculation, and orienta-tion. Because of concerns about rel-atively low specificity, the MoCA iscurrently recommended in situationswhere there is concern about thepatient’s cognitive status and theMMSE is in the normal range (≥ 24).The MoCA has been included inrecent systematic reviews, but itsmajor shortcoming as a screen is thatit takes approximately 10 minutes toperform.

ConclusionDespite uncertainties that exist inthe natural history of pre-clinicaldementia and limited symptomaticbenefits associated with pharma-cotherapeutic options for dementia,screening for dementia in thosewith risk factors remains an impor-tant component of clinical care.

Screening presents opportunitiesfor amelioration of reversible con-tributors to cognitive impairmentand optimization of risk factor pro-files.

The MMSE is not the most effi-cient or feasible screen for cogni-tive impairment in primary care,and several other options exist. Apositive screening test resultshould not be considered tanta-mount to a diagnosis of dementiaand should lead to further testing.

Table 4

Situations in Which Particular Screening Tests Might BePreferred

Situation Preferred test(s)

Patient belongs to an ethnic Memory Impairment Screen (MIS)minority

Only informant is available General Practitioner Assessment of Cognition (GPCOG) informant section

Suspicion of mild impairment Hopkins Verbal Learning Test*in a patient with high education Word Acquisition Test*

Very little time available Memory Impairment Screen (MIS)

Lots of time available Montreal Cognitive Assessment (MoCA)Mini Mental State Examination (MMSE)

* These tests are described elsewhere



References:1. Ashford WJ, Borson S, O'Hara R, et al.

Should older adults be screened fordementia? Alzheimers and Dementia2006;2:76-85.

2. Busch C, Kozak J, Elmslie T. Screeningfor cognitive impairment in the elderly.Can Fam Physician 1997; 43:1763-8.

3. Hansen EC, Hughes C, Routley G, etal. General practitioners' experiencesand understandings of diagnosingdementia: Factors impacting on earlydiagnosis. Soc Sci Med 2008; 67:1776-83.

4. Wilson JMG, Jungner G. (1968).Principles and practice of screening fordisease: Public Health paper. No. 34.Geneva: World Health Organisation.

5. Canadian study of health and aging:study methods and prevalence ofdementia. CMAJ 1994; 150:899-913.

6. Fulton AT. Dementia screening: shouldwe screen asymptomatic older adults?Med Health R I 2008; 91:224-5.

7. Petersen RC, Smith GE, Waring SC, etal. Mild cognitive impairment: clinicalcharacterization and outcome. ArchNeurol 1999; 56:303-8.

8. Jha A, Tabet N, Orrell M. To tell or notto tell-comparison of older patients'reaction to their diagnosis of dementiaand depression. Int J Geriatr Psychiatry2001;16:879-85.

9. Brayne C, Fox C, Boustani M.Dementia screening in primary care: isit time? JAMA 2007; 298:2409-11.

10. Canadian Consensus Conference onthe Diagnosis and Treatment ofDementia. 2007. Accessed online atwww.cccdtd3.ca/cccdtd/index.php

11. Courtney C, Farrell D, Gray R, et al.Long-term donepezil treatment in 565patients with Alzheimer's disease(AD2000): randomised double-blindtrial. Lancet 2004;363:2105-15.

12. Holsinger T, Deveau J, Boustani M, etal. Does this patient have dementia?JAMA 2007; 297:2391-404.

13. Doody RS, Stevens JC, Beck C, et al.Practice parameter: management ofdementia (an evidence-based review).Report of the Quality StandardsSubcommittee of the AmericanAcademy of Neurology. Neurology2001; 56:1154-66.

14. Okonkwo OC, Griffith HR, CopelandJN, et al. Medical decision-makingcapacity in mild cognitive impairment:a 3-year longitudinal study. Neurology2008; 71:1474-80.

15. Freter S, Bergman H, Gold S, et al.Prevalence of potentially reversibledementias and actual reversibility in amemory clinic cohort. CMAJ 1998;159:657-62.

16. Boustani M, Peterson B, Hanson L, etal. Screening for dementia in primarycare: a summary of the evidence for theU.S. Preventive Services Task Force.Ann Intern Med 2003; 138:927-7.

17. Folstein MF, Folstein SE, McHugh PR."Mini-mental state". A practical methodfor grading the cognitive state ofpatients for the clinician. J PsychiatrRes 1975; 12:189-98.

18. Brodaty H, Low LF, Gibson L, et al.What is the best dementia screeninginstrument for general practitioners touse? Am J Geriatr Psychiatry 2006;14:391-400.

19. Lorentz WJ, Scanlan JM, Borson S.Brief screening tests for dementia. CanJ Psychiatry 2002; 47:723-33.

20. Brodaty H, Pond D, Kemp NM, et al.The GPCOG: a new screening test fordementia designed for general practice.J Am Geriatr Soc 2002; 50:530-4.

21. Buschke H, Kuslansky G, Katz M, et al.Screening for dementia with thememory impairment screen. Neurology1999; 52:231-8.

22. Borson S, Scanlan J, Brush M. Themini-cog: a cognitive 'vital signs'measure for dementia screening inmulti-lingual elderly. Int J GeriatrPsychiatry 2000; 15:1021-7.

23. Milne A, Culverwell A, Guss R, et al.Screening for dementia in primarycare: a review of the use, efficacy andquality of measures. Int Psychogeriatr2008; 20:911-26.

24. Nasreddine ZS, Phillips NA, BedirianV, et al. The Montreal CognitiveAssessment, MoCA: a brief screeningtool for mild cognitive impairment. JAm Geriatr Soc 2005; 53:695-9.

The Canadian Review of Alzheimer’s Disease and Other Dementias • 12.1

Screening

Introduction The term ‘dementia’ refers to a fami-ly of diseases that share common fea-tures including impairments in mem-ory and other cognitive abilities suchas judgment, reasoning, and decision-making, along with disturbances inpersonality, mood, and behavior.Alzheimer’s disease (AD) is the mostcommon of the dementias world-wide, with the prevalence of othertypes of dementia (e.g., vascular,frontotemporal dementia) differingacross countries. In Canada, ADaccounts for 47% of all dementiasseen in memory clinics, followed bymixed dementia (24%, with themajority consisting of AD and vascu-lar dementia), vascular dementia(9%), frontotemporal dementia (5%),and Lewy body dementia (2%).1

Currently, dementia is estimatedto affect approximately 500,000

Canadians, or one in 11 peopleolder than 65 years.2 The preva-lence of dementia increases withage. In a large, national study ofindividuals aged 65 years and older,less than 5% of individuals aged 65to 74 years had a dementia, com-pared to approximately 12% ofthose aged 85 to 84 years andapproximately one third of individ-uals aged 85 years and older.3 Withthe aging of the population, thenumber of Canadians with demen-tia is projected to more than doubleover the next three decades, with anestimated 1 to 1.3 million peopleaffected.2

The most common forms ofdementia (AD, vascular dementia,mixed dementia) all are progres-sive, degenerative brain disordersthat increasingly interfere with cog-nitive, social, and occupational


Tackling a Tough Issue: Strategies for Identifying, Assessing,and Supporting Drivers with Dementia in the Primary Care SettingThere is substantial evidence that drivers with dementia pose significant risks to publicsafety. Nevertheless, just having a dementia such as Alzheimer’s disease is not a goodpredictor of driving competence. Thus, although all drivers with a progressive dementia willhave to stop driving at some point in the illness, using the diagnosis as a determiner oflicensing would be unfair to those who remain competent to drive. In considering drivingand dementia, there are three challenges for managing patient care and promoting publicsafety that are categorized as: Identification, Assessment, and Consequences. Each isconsidered with a new model being trialed in a Primary Care Network described.

By Bonnie Dobbs, PhD; Henry Zirk, MD, CCFP, FCFP; and Shannon Daly, RN, MN

Bonnie Dobbs, PhDDirector, The Medically At-RiskDriver CentreDirector of Research, Division ofCare of the ElderlyAssociate Professor, Department ofFamily Medicine,University of Alberta

Dr. Harry Zirk, MD, CCFP, FCFPCertification in the Care of the ElderlyMedical Director, Geriatric HealthServices, Grey Nuns HospitalEdmontonAssociate Clinical Professor,Department of Family Medicine,Faculty of Medicine & Dentistry, University of Alberta

Shannon Daly, RN, MNClinical Nurse Specialist inGeriatrics, Grey Nuns CommunityHospital and Health CentreEdmonton, Alberta

functioning, including driving.There now is a substantial body ofconverging evidence that driverswith dementia pose significant risksto public safety. Crash data general-ly reveal that individuals withdementia have crash rates thatexceed those of non-demented sen-iors, and results from on-roadassessments indicate that many (butnot all) individuals with a dementiahave higher failure rates on suchassessments.4 In general, the find-ings indicate that some drivers inthe early stages of the disease maystill be competent to drive; findingsthat support the move away fromrevocation of driving privilegesbased on diagnosis alone. However,as the disease advances and thefunctional abilities needed for driv-ing decline, the probability of reten-tion of competency for drivingdeclines.

Identifying, Assessing, andSupporting Individuals withDementia Whose DrivingSkills Have Declined to anUnsafe Level Physicians and other healthcareproviders. There is increasing pres-sure and a growing mandate forphysicians to address their patients’medical fitness to drive. This pres-sure is likely to increase as more andmore individuals enter their senioryears, where medical impairmentssuch as dementia are most likely tooccur. Unfortunately, attention toeducating and equipping the medicalcommunity to address this difficult(and sometimes very emotional)issue has not kept pace with theincreasing responsibility for action.

In the sections below, we provide asummary of the best available evi-dence to assist physicians and otherhealthcare providers with the identi-fication, assessment, and support ofdrivers with dementia. Informationalso is provided on legal responsibil-ities of physicians related to med-ically at-risk drivers, along with sug-gestions for risk management.Family members/caregivers play animportant role in identification,assessment, and support of driverswith a dementia. In the final sectionof this paper, we provide informa-tion that physicians and other health-care professionals can use in engag-ing this important sector of thedementia and driving community.

Identification. The majority ofindividuals with dementia will becared for by family physicians.5 Oneof the primary challenges faced byphysicians is the identification ofthose with dementia who may be atrisk for impairments in driving per-formance. Currently, there are anumber of screening tools thatphysicians can use to assist in theidentification of individuals with acognitive impairment/dementia. Themost commonly used tool is theMini-Mental State Examination(MMSE).6 Although not designed as ascreening tool for identifying driverswith a cognitive impairment/dementiawhose driving has become unsafe orfor making decisions about drivingcompetency, it is commonly used forthat purpose. However, research hasdemonstrated that the MMSE lacksthe sensitivity and specificity for pre-dicting driving competency in patientsin the early stages of dementia. Forexample, some studies report moder-

ate correlations between MMSEscores and driving performance fordrivers with dementia overall,7,8 butno correlation with driving perform-ance at the upper end of the MMSEscale where the information is mostneeded.7

The Montreal CognitiveAssessment (MoCA)9 is a tool thatcan be used in the clinical setting toidentify patients who are suspectedof having mild cognitive impair-ment (MCI). Although designed toassist physicians in the detection ofMCI and not dementia, the belief isthat it is more sensitive in beingable to detect individuals in theearly stages of dementia (e.g., thosewith MMSE scores of 26 to 30, andthose with non-AD dementia).10,11

Although useful as a screening toolfor the detection of cognitiveimpairment, there currently is noresearch demonstrating the validityand reliability of the MoCA as ascreening tool for driving impair-ment in individuals with cognitiveimpairment/dementia.

There are a number of brief neu-ropsychological tests (e.g., Trails Band the clock-drawing task) thathave been advocated for use asscreening tools in the clinical set-ting for driving impairment in thispatient population. However, theiruse for identification of individualswith dementia whose driving skillshave declined to an unsafe level iscompromised by a lack of strongevidence. That is, despite evidencefor low-to-moderate correlationsbetween the tests’ outcomes andmeasure of driving performance(e.g., crashes, on-road assessment),the lack of a cut-off point with



demonstrated sensitivity/specificityin predicting driving competencylimits their value.12

The need for evidence-basedscreening tools for the detection ofdriving impairments in the clinicalsetting has not gone unnoticed.Recent research has resulted in thedevelopment of an inexpensive,brief screening tool for use in theclinical setting for identifying med-ically at-risk drivers.13 This ‘physi-cian-friendly’ tool, which is easy toadminister and score, has high sen-sitivity and specificity in predictingpass/fail on an on-road assessment.It is anticipated that this screeningtool will be available for wide dis-tribution in early 2009.

Assessment. Unlike screening,where the goal is simply to identifythose who may be at risk fordeclines in driving competency,assessments focus on the determi-nation of driving competence. Forindividuals with dementia, deci-sions about driving often are moredifficult for those in the early stagesof the disease. As noted in theCanadian Medical Association(CMA) guidelines,14 decisionsabout driving for mild dementiashould not be based on outcomesfrom screening tests such as theMMSE, but rather should be madeon an individual basis, with testingconsisting of a comprehensive off-and on-road test at a specializeddriving centre approved by theprovincial or territorial ministry oftransportation. Recommendationsfrom the Third CanadianConsensus Conference on theDiagnosis and Treatment ofDementia (CCCDTD3)15 are con-

sistent with the CMA guidelines.14

However, as noted by Hogan et al,5

this type of assessment is not avail-able in all parts of the country.Physicians are encouraged to con-tact their provincial department ofmotor vehicles (Table 1;15,29 pleasesee online version of this article at www.stacommunications.com/adreview.html to view this Table)for information on the availabilityof specialized driving assessmentsfor medically impaired drivers intheir area of practice. In instanceswhere the assessment is not avail-able, best practice would be forreferral for a ‘regular’ on-roadassessment, with the recognition ofits limitation and defensibility formedically impaired drivers.

The progressive nature ofdementia means that deteriorationof driving skills is a certainty. Forindividuals in the mild stage whohave demonstrated competency onan on-road assessment, repeat test-ing should occur at regular inter-vals. Guidelines from the QualityStandards Subcommittee of theAmerican Academy of Neurology16

recommend that driving evaluationsbe conducted every six months fordrivers with very mild dementia ofthe Alzheimer’s type. However, asnoted by Molnar et al,17 the paucityof research in this area has resultedin “opinion-based guidelines thathave little evidential support.”Based on the available evidence, thebest practice recommendation is toassess on a regular basis (e.g., everysix months), but continue to moni-tor the patient for declines in func-tional abilities that may signal theneed for more frequent assessment.

The incorporation of questionsabout driving into the patient histo-ry at each visit also may provideadditional information relevant todriving. It is important to note,however, the potential for inaccura-cy in self-reports of driving, partic-ularly in this patient population.Corroboration from family mem-bers/caregivers related to the driv-ing history is recommended.

For individuals in the moderate tosevere stage of dementia (defined asMMSE scores of 11 to 17 or 0 to 10,respectively), ability declines inother areas of instrumental activitiesof daily living (e.g., ability to inde-pendently manage finances, preparemeals, do the shopping, or take careof the household), and/or reports ofadverse driving events (crashes,reports of other unsafe drivingbehaviors) may signal that drivingcompetency also has declined, anda formal assessment of driving maynot be needed. The CMA guide-lines14 and the CCCDTD315 statethat moderate-to-severe dementia isa contraindication to driving. It islikely the case that the majority ofindividuals with moderate dementiaand all individuals with severedementia are unsafe to drive.However, the evidence to supportthis recommendation is lacking.There is the potential that higher-functioning individuals with a pro-gressive dementia, who score poorlyon the MMSE due to education orlanguage biases, are still ‘fit to drive’despite scores at the higher end ofthe moderate range of the MMSE(e.g., 15 to 17). In those instances,best practice would be referral for anon-road assessment.


Driving


Costs associated with drivingassessments often are perceived asa barrier by patients and the med-ical community. In some instances,on-road assessments for medicallyat-risk drivers may be covered bythird-party providers. However,often they are not. In instanceswhere cost is seen as a barrier, itmay be helpful to convey to thepatient and/or the family that thedriving assessment is an investmentin their safety (and public safety aswell), and is one of the costs associ-

ated with driving privileges. Fromthe physician perspective, drivingassessments are an importantresource in the care and manage-ment of patients with dementia, inthat they can enable good evidence-based decision-making. Impor -tantly, the results from the assess-ment allow the physician to remainat ‘arms length’ from the evaluationprocess and to remain an advocatefor the person just as they wouldwhen delivering bad news fromother specialist testing.

Support to the Patient andHis/Her Family inTransitioning from Driving toDriving CessationAll individuals with a progressivedementia will have to ‘hang up thekeys’ at some point in their illness.Addressing the driving issue often

is difficult for the physician, theindividual with dementia, and forfamily members. Because driving issuch an important privilege formany patients, it is not surprisingthat conflict may ensue. However, itshould be possible to avoid much ofthe conflict with good communica-tion skills and with the resourcesavailable from the community.

Developing a communicationstrategy will be helpful. Deliveringbad news is difficult and can bestressful for the healthcare profes-

sional as well as for the patient.Unfortunately, there has been littleattention to the communicationprocess, leaving the medical commu-nity with little or no training in thiscritical area. There are, however, sev-eral guiding strategies that have beendeveloped in other areas of medicinethat physicians can use as a basis fordeveloping a communication strate-gy that fits their own personality(e.g., Breaking Bad News: A Guidefor Health Care Professionals18).This can result in more effectivecommunication and reduced stressfor all concerned. In recently devel-oped, internationally peer-reviewedcourseware on medically at-risk driv-ers (The Pallium Project19), an entiremodule is devoted to communicationissues related to driving. Based onthe SPIKES protocol (Setting,Perception, Invitation, Knowledge,

Empathy, Strategy),18 physicians areprovided with information intendedto help in the development of a com-munication strategy. Sequencesfrom a video-based, dramatic-enactment case study entitled‘Difficult Conversations: Co mm u -ni cating With Your Patients WhenIt’s Time to Stop Driving’ (ThePallium Project20) support the devel-opment of a personalized communi-cation strategy.

Having to stop driving often isvery difficult for the individualand for their caregivers and fami-ly members. Specialized Driving-Cessation Support Groups (DCSGs)are available in some jurisdictionsin Canada to assist the individualwith dementia and his/her familymembers. Outcomes from researchindicate that drivers who attend aspecialized support group cope bet-ter with having to stop driving thanthose who do not attend such sup-port groups.21 Results from thesame study demonstrated that fami-ly members/caregivers also copebetter after having attended a spe-cialized support group that dealsspecifically with the driving issuecompared to those who attendedregular support groups. Videos,reflecting the experiences of indi-viduals with dementia and theirfamilies who are living with thereality of having to stop driving,have been developed. ‘After TheKeys Are Gone—For Health CareProfessionals’ (The Pallium Pro -ject22) is available to assist physi-cians and healthcare professionalsin dealing with this often sensitiveissue. Information on how to obtaininformation about the courseware


The progressive nature of dementia means thatdeterioration of driving skills is a certainty. Forindividuals in the mild stage who have demonstratedcompetency on an on-road assessment, repeat testingshould occur at regular intervals.

Driving


and the DVDs is provided inAppendix A.

Planning for mobility. It alsowill be important for the individual(with the assistance of family mem-bers) to plan for alternate ways tostay mobile. Physicians can play animportant role by providing infor-mation on resources in the commu-nity. To assist in that process, detailedinformation for the individual andhis/her family members is providedtoward the end of this article.

Legal responsibilities and risk.Professional organizations such asthe CMA recommend physiciansalways attend to the driving issue(sections 1 and 3 in the CMADriver’s Guide14). After studyingthe issue, the CCCDTD315 formal-ly adopted a recommendation forphysician participation. They alsoprovided a recommendation thatphysicians report, to the licensingauthority, all patients suspected ofbeing medically unsafe to drive,even in provinces without mandato-ry reporting.

In Canada, all provinces and ter-ritories “impose a statutory duty onphysicians related to reporting onpatients deemed unfit to drive, withthe duty to report prevail[ing] overa physician’s duty of confidentiali-ty.”14 Physicians in seven of the 10 provinces and all Territories(Northwest Territories, Yukon, andNunavut) are required by law toreport patients with medical ill-nesses that may affect driving.Provinces without mandatoryreporting legislation are Alberta,Quebec and Nova Scotia. Infor -mation relevant to each provincecan be found in Table 2.

Concerns about endangering thepatient-physician relationship areamong the frequently cited barriersto physician engagement in thedriving issues. Fear of litigationalso may be a barrier to physicianreporting of medically at-risk driv-ers. That is, physicians may fear lit-igation from the patient for report-ing him or her to the licensingauthority. At the same time, theycould be held legally liable for fail-ing to report a medically unfit driv-er. All provinces and territories inCanada protect the reporting physi-cian from litigation if reporting ingood faith. Some, but not all,provinces protect confidentiality(Table 2).

Physicians also should be awarethat parties who have been injured ina vehicle crash have successfullybrought legal action against physi-

cians, alleging that the crash wascaused, in part, by the medical dis-ability of their patient who should nothave been allowed to drive. Actionsalso have been brought againstphysicians for not attending to thedriving issue (even in non-report-ing provinces) when their patientwith a disability was in a crash(e.g., Spillane vs. Wasserman23 andToms vs. Foster24).

A key to understanding legaljudgments seems to be foreseeabili-ty. In the case of driving, foresee-ability seems to mean that thepatient’s medical condition is suchthat the physician could reasonablypredict that it could lead to a crash.A frequently cited U.S. case onforeseeability is Freese vs.Lemmon25 in which a claim wasbrought against the physician of apatient who was known to have

Appendix A

Resources for Physicians, Allied Healthcare Professionals

1. Instructional DVDs for the healthcare professional: ‘After The Keys AreGone—For Health Care Professionals’

This DVD presents the experiences of four sets of individuals withdementia and their families living with driving cessation, with tailoredmessages that can assist the healthcare professional in dealing with thisdifficult issue.

For availability, go to: www.mard.ualberta.ca

2. For information on the availability of Driving Cessation Support Groupsin your area, contact:

Dr. Bonnie DobbsPhone: (780) 492-0374Email: [email protected]: www.mard.ualberta.ca

3. Publications that can assist in talking with family members about thedriving issues include: At the Crossroads Family Conversation aboutAlzheimer’s Disease, Dementia & Driving and We need totalk…Family Conversations with Older Drivers.

These publications are available free of charge or can be downloadedfrom: http://www.thehartford.com/alzheimers/brochure.html

epilepsy and who had a seizurewhile driving, resulting in a crash.The Supreme Court of Iowa heldthat the attending physician negli-gently failed to advise the motoristnot to drive and failed to warn himof the dangers of driving followinga seizure. Because the reportinglaws and statutes differ betweenprovinces/territories, physicians areencouraged to familiarize them-selves with the requirements forreporting medically unfit drivers intheir jurisdictions.

In summary, physicians can anddo play an important role in identify-ing individuals with dementia whoare ‘medically at-risk’ drivers. Tofacilitate that process, we recommendthat physicians begin a driving histo-ry on all patients suspected of or diag-nosed with dementia. Completingdriving histories on medically at-risk

patients has a number of advantages,including improved protection fromlegal liability (managed risk);improved care; and improved publicsafety. Physicians in family practiceand/or primary care should screen toidentify patients who may be at riskfor declines in driving performance,and refer such patients for a drivingassessment. Family physicians alsowill need to counsel their patientsdepending on the outcome ofassessment and continue to monitorthose who may be at risk at regularintervals.

Family Members Identification information forfamily members. Family membersplay a very important role in help-ing to identify when individualswith dementia may no longer besafe to drive. However, getting fam-

ily members involved in ‘the driv-ing issue’ is often very difficultbecause of the saliency of drivingfor mobility, independence, andself-esteem. Family member partic-ipation can be fostered by startingdiscussions about driving early onin the disease process. Starting dis-cussions early, while the patient ismore cognitively intact and able toparticipate coherently, allows thepatient to participate actively inplanning for the transition fromdriving to driving cessation. Earlydiscussions also are a time when thepatient is more likely to haveinsight and to understand the conse-quences of his or her illness.

Warning signs that driving mayno longer be safe. The drivingbehaviors listed below indicate thatdriving may no longer be safe.Family members can use the list toobserve the driving of their relativeand to keep track of changes overtime. It will be important for them tolook for a pattern of warning signsand for an increase in the frequencyof occurrence of the signs. Whenchanges do occur, it is important thatthe information be communicated tothe family physician, just as informa-tion about behavioral disturbances,changes in personality, or worseningmemory skills is conveyed. • Missing traffic lights or road

signs (e.g., not stopping at redlights or stop signs).

• Having difficulty merging orchanging lanes.

• Drifting into other lanes.• Stopping in traffic for no

apparent reason.• Driving on the wrong side of

the road.



Table 2

Mandatory Reporting Regarding Driving

Province or MandatoryTerritory Reporting Protection Privileged

Alberta — √ √British Columbia √ 1 √ —

Manitoba √ √ √New Brunswick √ √ —

Newfoundland √ √ √NW Territories, Nunavut √ √ √Nova Scotia — √ —

Ontario √ √ √Prince Edward Island √ √ √Quebec — √ √ 2

Saskatchewan √ √ √Yukon √ √ —

1British Columbia (Sec 230): mandatory reporting only if the driver continues to drive aftertheir physician advises him or her to stop.2Not admissible in court.

Driving


• Driving too slowly.• Confusing the gas and the brake

pedals.• Getting lost while driving (even

in familiar locations).• Being unaware of vehicles,

bicycles, or pedestrians.• Having accidents, near misses,

fender benders, tickets.• Getting small scrapes on their

vehicle or garage.• Being easily distracted while

driving.• Being honked at by others. • Delayed response to unexpected

events.For a number of individuals with

progressive dementia, driving maybe safe in the early stages of the ill-ness, but become unsafe as the ill-ness progresses. Family memberscan continue to monitor their rela-tive’s driving behavior. Familymembers also can continue to moni-tor driving behaviors of patients whohave passed an assessment, using thelist of warning signs provided above.It also will be helpful for familymembers to keep a written record ofdriving behaviors, along with con-cerns that they may have, and dis-cuss those with the family physicianor one of the healthcare profession-als (e.g., nurse, social worker) work-ing in the family-practice office.

Assessment information. A com-prehensive off- and on-road drivingassessment is the best method fordetermining if an individual is safe todrive in the early stages of dementia.However, as noted above, routineroad tests that are used for novicedrivers may not detect driving abili-ties that have declined to an unsafelevel. Family physicians can provide

family members with information onthe need for, importance of, andprocess for referrals for a more spe-cialized driving assessment.

Support information. For manypeople, driving is associated withindependence and freedom. Thus,the mere mention of having to giveup driving can be upsetting formany individuals. The strong emo-tions associated with loss of drivingprivileges make discussions aboutdriving very difficult. Helping fam-ily members prepare for those dis-cussions will help (Appendix B).

Preparing for conversationsabout driving. It is important thatneither the medical community norfamily members postpone conver-sations about driving because offear or guilt. That is, it is moreimportant to avoid crashes thatcould result in injury or death thanto avoid conversations that areunpleasant in nature. Below aresome conversation starters that maybe helpful for family members:26

• “Dad, I’m worried about yourdriving. I noticed yesterday thatyou went through a stop signwithout stopping and that youhad trouble merging in traffic.I also have noticed that thereare new dents and scrapes onthe car lately.”

• “Mom, yesterday when we wereon our way to the grocery store,you had some close calls. I’mworried about your driving.”

• “Honey, I’ve noticed that youdon’t seem to remember theway home from the grocerystore. I’m worried about yougetting lost while driving.”

• “Dad, you’ve been a good

driver all of your life. Now,with your illness, I’m worriedthat you are no longer the safedriver that you used to be.” In discussions, family members

can be advised to ask the individualhow he/she is feeling and acknowl-edge their emotions. A good strate-gy is to avoid trying to convince theindividual about the need to stopdriving through rational explana-tions. Focusing on his/her feelings(e.g., loss of independence, decrea -ses in self-worth, reduced self-esteem, role changes) is a betterstrategy because those are many ofthe primary issues associated withloss of driving privileges.

It also is critical for family mem-bers to stay calm during the discus-sions. Staying focused on how the ill-ness has changed the individual’sdriving will help prevent arguments.In instances where the individualwith dementia is focused on howgood his/her driving record has been,rebuttals are better answered by re-focusing on the illness and the pres-ent. Acknowledging the past drivingrecord reassures the person, butemphasizing that ‘things change,’and that the illness is changing manythings will help to keep the discus-sion on target. In all instances, under-standing the patient’s thoughts, feel-ings, and fears is important. It maybe the first time they have to face andaccept what it means to have an ill-ness such as dementia or cognitiveimpairment.

Referral to a specialized driving-cessation support group, or to asupport group offered by the localAlzheimer Society where the spe-cialized support groups are not

available, can help the individualand family members cope withdriving cessation. A video, entitled“After The Keys Are Gone—ForIndividuals and FamiliesExperiencing Life With Dementia”(The Pallium Project27), is availableto assist with that process.

Planning for mobility. It alsowill be important for the individualand family members to plan foralternate ways to stay mobile.Along with enlisting the aid of fam-ily and friends, physicians canencourage family members to lookfor transportation options to helpthe patient stay mobile. Family andfriends are the primary alternativesto driving for older adults.However, there may be conflictingfeelings of ‘being a burden or aninconvenience.’ Family members

can do something ‘in exchange’ fora ride, such as paying for gas, tak-ing the driver to lunch, makingcasseroles or cakes, etc.

Family members need to be onthe lookout for other transportationoptions available in the community.Often, for individuals with demen-tia, standard public transportation(e.g., buses, light rail transit) is inap-propriate because of the memoryimpairment. Options that may bemore suitable include local taxicompanies and volunteer and paiddriving services. Family membersshould be advised to ask for a regu-lar driver, and to investigate whetherthey can establish a monthlyaccount with the service provider.This may help the family membersand the individual with dementiafeel more comfortable in taking

taxis or in using other alternatemodes of transportation.

Developing a transportationbudget also will be helpful.‘Owning and operating’ a car isexpensive. It should be noted thatthe dollars used to own and operatea private vehicle can be usedinstead to keep mobile. For exam-ple, in 2008, owning and operatinga mid-size vehicle in Canada costapproximately $9,000, an amountthat translates into a total of 450$20 cab rides a year (more than oneevery day)! A form to help calculatethe amount spent on the family caron an annual basis is provided inAppendix C (see online version ofthis article at: www.stacommunica-tions.com/adreview.html), and canbe provided to the individual withdementia and/or their family mem-ber early in the disease process.Finally, there are many home-deliv-ery options for many services,including groceries, pharmacies,meal support, hair dressing, etc.Contacting the local AlzheimerSociety chapter (or local senior’sorganizations if a Society chapter isnot available) can provide helpfulinformation for caregivers to assistin locating community-basedresources.

Legal responsibilities of drivers.In all jurisdictions in Canada, it isthe driver’s legal responsibility tonotify their driver-licensing author-ity of a health problem that mayinterfere with their ability to drivesafely. Medical professionals canremind patients and families oftheir legal responsibility and poten-tial insurance issues if they do notreport their health problem. Contact



Appendix B

Resources for Individuals with Dementia and Family Members

1. Publications that can assist in talking with family members about thedriving issue: At the Crossroads Family Conversation about Alzheimer’sDisease, Dementia & Driving and We need to talk…FamilyConversations with Older Drivers

These publications are available free of charge or can be downloadedfrom: http://www.thehartford.com/alzheimers/brochure.html

2. Instructional DVDs for individuals and families: After The Keys AreGone For Individuals and Families Living With Dementia

This DVD presents the experiences of four sets of individuals withdementia and their families living with driving cessation. Foravailability, please go to: www.mard.ualberta.ca

3. For information on the Driving Cessation Support Groups pleasecontact:

Dr. Bonnie DobbsPhone: (780) 492-0374Email: [email protected]: www.mard.ualberta.ca

4. Alzheimer Canada:http://www.aarp.org/families/driver_safety/driver_safetyissues/a2004-06-21-whentostop.html

information for each of the provin-cial licensing authorities is provid-ed in Table 2 (see online version ofthis article at: www.stacommunica-tions.com/adreview.html).

In summary, many illnesses, aswell as treatments for those illness-es, affect a person’s ability to drivesafely. For many caregivers, issuesrelated to driving are very difficult.Help is available for many of thefollowing questions:• Is driving safe? • What can I do if I think that

driving is no longer safe?• How do I talk to someone I love

about the driving issue?• What resources are there in the

community that can help us staymobile?

• How do I handle the anger anddepression?Although many caregivers feel

like they are alone, there often aremany resources in the community

that can help in dealing with thedriving issue. Caregivers should beencouraged to talk to their doctor orcall their local Alzheimer Societychapter to obtain more information.

Conclusion Drivers with dementia present a seri-ous challenge to the medical commu-nity. Awareness, through educationand professional development, is keyto meeting the public-health chal-lenge and increasing effective partic-ipation by the medical community.There is clearly a need for increaseddetection of dementia in the primary-care setting, and this can be fosteredby the availability of an evidence-based protocol to assist in thatprocess. This, and the identificationof when a driving evaluation isneeded, have been foci of some ofour research. Over the past threeyears, we have developed, imple-mented, and are currently evaluat-

ing a leading-edge, holistic proto-col for identifying and managingthe medically at-risk driver in theprimary-care setting.28 The proto-col, implemented in the EdmontonSouth Side Primary Care Network(PCN), represents an importantstep in improving access to careand management and the coordina-tion of services related to the med-ically at-risk driver within a PCNsetting. However, the PCN settingis unique and protocols effective inthat situation may not be as usefulin other physician settings, noruseful in community-health home-visit settings. Given the impor-tance of identifying and assessingmedically at-risk drivers, and theunique positioning of healthcareprofessionals in this process,exploring adaptations or alterna-tives to the PCN protocol for use indiverse situations should be a highpriority.


Driving

1. Feldma H, Levy AR, Hsiung GY, et al. ACanadian cohort study of cognitiveimpairment and related dementias(ACCORD): study methods and baselineresults. Neuroepidemiology 2003;22(5):265-74.

2. Alzheimer Society of Canada. Rising tide:The impact of dementia on Canadiansociety (Full study expected June 2009).Ottawa, ON: Alzheimer Society of Canada2009.

3. Canadian Study of Health and AgingWorking Group. Canadian study of healthand aging: study methods and prevalenceof dementia. Canadian MedicalAssociation Journal 1994; 150(6): 899-913.

4. Dobbs BM. Medical conditions anddriving: A review of the literature (1960-2000). DOTHS 809 690. Washington, DC:U.S. 2005. Department of Transportation.

5. Hogan, DB, Bailey P, Black S, Carswell A,et al. Diagnosis and treatment of dementia:4. Approach to management of mild tomoderate dementia. Canadian MedicalAssociation Journal 1998; 197(8), 787-93.

6. Folstein MF, Folstein SE, McHugh PR.Mini-mental state: A practical method for grading the psychiatric status of

patients for the clinician. Journal of Psychiatric Research 1975; 12:189-98.

7. Fitten LJ, Perryman KM, Wilkinson CJ, etal. Alzheimer and vascular dementias anddriving A prospective road and laboratorystudy. Journal of the American MedicalAssociation 1985; 273:1360-5.

8. Odenheimer GL, Beaudet M, Jette AM, etal. Performance-based driving evaluationof the elderly driver: safety, reliability, andvalidity. Journal of Gerontology 1994;A(49): M153-9.

9. Nasreddine ZS, Phillips NA, Bédirian V, etal. Journal of the American GeriatricSociety 2005; 53(4):695-9.

10. Martini, Popovi I, Šeri V, Demarin V. Mildcognitive impairment in symptomatic andasymptomatic cerebrovascular disease.Journal of the Neurological Sciences 2007;257(1-2):185-93.

11. Smith T, Gildeh N, Holmes C. TheMontreal cognitive assessment: validityand utility in a memory clinic setting. TheCanadian Journal of Psychiatry 2007;52(5): 329-32.

12. Molnar FM, Patel A, Marshall SC, et al.Clinical utility of office-based cognitivepredictors of fitness to driver in persons

diagnosed with dementia: A systematicreview. Journal of the American GeriatricSociety 2006a; 54:1809-24.

13. Dobbs, BM. The SIMARD®: A reliable andvalid in-office screening tool for theidentification of medically at-riskdrivers. The Gerontologist 2008; 49(Sp. ISS III), 505.

14. Canadian Medical Association.Determining medical fitness to operatemotor vehicles. CMA Driver's Guide.2006: 7th ed. Ottawa, Ontario. Availableat: http://www.cma.ca /multimedia/CMA/Content_Images/Inside_cma/What WePublish/Drivers_Guide/Section03_e.pdf

15. Third Canadian Consensus Conferenceon Diagnosis and Treatment ofDementia Working Group (2007). ThirdCanadian Consensus Conference onDiagnosis and Treatment of DementiaRecommendations. Available at:http://www.cccdtd.ca/cccdtd /pdfs/Final_Recommendations_CCCDTD_2007.pdf

16. Dubinsky RM, Stein AC, Lyons K.Practice parameter: driving in patientswith Alzheimer's disease. Report of theQuality Standards Subcommittee.

Neurology 2000; 54, 2205-11.17. Molnar FJ, Patel A, Marshall SC, et al.

Systematic review of the optimalfrequency of follow-up in persons withmild dementia who continue to drive.Alzheimer Disease and AssociatedDisorders 2006b; 20(4) 295-7.

18. Buckman R. Breaking bad news: aguide for health care professionals.1992. Baltimore: Johns HopkinsUniversity Press.

19. The Pallium Project (2008a).Medically-at-risk driving coursewarepackage. ISBN 978-0-9809754-1-3.

20. The Pallium Project (2009b). Difficultconversations: communicating withpatients when its time to stop driving.ISBN 978-0-9809754-2-0.

21. Dobbs B, Harper L, Wood A.Transitioning from driving to drivingcessation: the role of specialized

driving cessation support groups forindividuals with dementia. Topics inGeriatric Rehabilitation 2009; 25(1)74-87.

22. The Pallium Project (2008c). After thekeys are gone: primary health careprofessional edition. ISBN 978-0-9809754-3-7.

23. Spillane vs. Wasserman [1993] 13C.C.L.T. (2d) 267 (Ont. Gen. Div.).

24. Toms vs. Foster [1994] Ont. C.A.,M.V.R. [3rd] 34.

25. Freese v. Lemmon. 210 NW 2d 576,577-78, 580 (Iowa 1973).

26. Dobbs, BM, Dobbs, AR, Triscott, J.The senior driver: Common myths andfacts. Information for physicians onassessment and referral issues (2ndEdition). Edmonton, Alberta 2007: TheDR Group.

27. The Pallium Project (2008d). After the

keys are gone: individuals and familiesexperiencing life with dementiaedition. ISBN 978-0-9809754-4-4.

28. Dobbs B, Daly S, Carstensen B, Zirk H,Dobbs A. Overview and phase oneresults of the Edmonton SouthsidePrimary Care Network medically at-riskdriver initiative. Poster presented atThe Alberta College of FamilyPhysicians’ (ACFP) Annual ScientificAssembly (ASA), AFPRN PosterPresentation, February 28, 2008, Banff,Alberta.

29. Chertkow H. Diagnosis and treatmentof dementia: Introduction. Introducinga series based on the Third CanadianConsensus Conference on theDiagnosis and Treatment of Dementia.Canadian Medical Association Journal2008; 178(3)316-21.

21.1 • The Canadian Review of Alzheimer’s Disease and Other Dementias


New terms are being used thesedays to describe the care of the

elderly: person-focused care, a pros-thetic approach, proximology, med-icalized residences with a humandimension, and even care re-engi-neering. These words indicate a truedesire to do better and change thestructure of the care provided at theend of a person's life, even thoughthe actual introduction of this philos-ophy remains to be clarified.1

Under the public health system,extended-care centres often groupAlzheimer patients on specific floorsbehind locked doors. This is obvious-ly one solution, but there are better.The first home specifically designedfor Alzheimer patients was theADARDS centre2 which opened in1991. The centre is configured in theform of a cross with four separateself-contained “houses” during theday. At night, through the use of cam-ouflaged doors, the complex convertsinto four wings of a single unit, witha central nurses’ station at its core.

After several trials, the ideal numberof patients per unit has been set atnine during the day and 36 at night.Surveillance is provided by silentalarms that are activated at the nurses’station (e.g., if a patient gets out ofbed). Food is prepared daily in eachunit, because odors are important inmanaging the disease. Each unit alsohas its own enclosed garden andsome animals as well (zootherapy).The use of chemical tranquilizers isgenerally discontinued after onemonth for most residents and the cen-tre has never used physical restraints.Another notable point is that therehave been no cases of employee burn-out since the centre opened.

The design of Alzheimer homesimproved over the following years,and other homes were soon created invarious countries. Today, there aremany Alzheimer homes in the UnitedStates. Most of them are managed byprivate interests, like the sixAlzheimer houses of the RSL HavenGroup.3 In France, a physician entre-preneur, Dr. Sotton, has now openeda ninth Alzheimer home (Jardinsd’Asclépios).4 In Canada, there arealready several models in place: theDorothy Macham Centre5 in Toronto,the Strathcona Alzheimer CareCenter6 in Edmonton, the prosthetic

unit at Saint Brigid’s Home7 inSillery, Carpe Diem8 and Jean XXIIIin Trois Rivières, Mémoire du Coeur9

in Joliette, and Fleur-Ange10 in Hull.In the last four years other Alzheimerhomes were built. In 2005 inLongueuil and Sherbrooke and in2007 the Francesco Bellini Home inLaval, the Pavillon des Bâtisseurs inMontréal and the Maison Alzheimerde la Rive-Sud. taking their inspira-tion from their forerunners (thePavillon des Bâtisseurs in Montrealand the Maison Alzheimer de la Rive-Sud). Quebec has also completed theconstruction of a specialized researchfacility, the Alzheimer-Vilar Centre,which has been based on otherEuropean centres.11

The principle behind all of theabove-mentioned Alzheimer resi-dences is to group a dozen patientsinto semi-family units. This pros-thetic approach makes the best useof residents' present and residualabilities, rather than using the degreeof loss as the means of classification(which is the usual practice inextended care centres today). It ismore a question of accompanyingpatients through the process of cog-nitive diminishment, rather thanreminding them that they used tofeel more at ease in society in gener-

The number of Alzheimer homes is likely to multiply over the next decade, given themassive increase in patients being predicted. In addition to the well-tried prostheticapproach, an Alzheimer home should ideally contain three components: healing architecture,a more humanized approach to human-resource management, and leading-edge electronicsurveillance and artificial intelligence.

By Bernard Viau, BA, MA, Fellow CSI

The Ideal Alzheimer Home

Bernard Viau, BA, MA, Fellow CSIFormer Coordinator, Maison AloisAlzheimer des Laurentides, St-Jérôme,Former Editor of the Alzheimer’ssection at DMOZ.org and son of adeceased Alzheimer mother.



al. This approach is, in fact, not new.The first to apply the prostheticapproach (caring for patients withcompassion), were nursing nuns.

Definite improvements have beenmade in the architectural design ofhospitals and extended-care centres.We now know that all space sur-rounding us represents an invisibleforce that influences the way we feeland, in a way, dictates our instinctiveconduct. For example, what is thehidden message12 that the architec-tural environment (e.g., a fortress-like nurses' station, a spacious entryhall like those found in hotels, a largecounter like in an after-sales servicedepartment, a small corner office, ora comfortable, welcoming sittingroom) transmits to patients, familiesand employees? As such, the archi-tectural environment has a directimpact on our perception of othersand human relationships.13 Like chil-dren, Alzheimer patients will reactfar more intensely to this invisiblecomponent of the architecture thanwe would. For that reason alone, wemust create a special environment forthem, a space that they will be able torecognize and call home.

DesignSeveral studies have been conductedconcerning the ideal physical layoutfor Alzheimer units, consideringissues ranging from doorknobs to themost attractive wall colours. However,most Alzheimer houses today are builton a rectangular or, more rarely, ahexagonal plan. Alternatively, theycan have a circular configuration, likeLe Cantou14 in Switzerland andMémoire du Coeur in Joliette,Quebec. While a healthy adult may

adjust fairly well to a Kafka-like typeof architecture, the same cannot besaid for children or patients who feelmore at ease in a more intimate, invig-orating space. A good example ofarchitectural adaptation in Canada isthe Hospital for Sick Children, con-structed under the direction ofBernstein and Associates.15 The sameapplies to the McMaster UniversityHealth Centre, with an environmentthat makes one think of giant buildingblocks. But, as the designers of thesecentres have said, when dealing withAlzheimer patients we must go fur-ther than a style of architecture,whereby medicine is delivered to thepatients.

Something special is required,something unique. Why? AnAlzheimer patient can decide at twoin the morning that he wants to gohome. The word “home” in this con-text denotes a profound, fundamentalreality, because the word does notrefer to his previous residence but toa state of mind, a feeling of comfortand safety within an environmentrich with meaning. What Alzheimerpatients who suddenly pack theirbags are really saying is that theyfind our care centres impossible tolive in and feel they are there justwaiting to die. The word cantoucomes from the Old French languageand means a welcoming home,where safety and comfort reign. Suchthings as a pleasant aroma lingeringthroughout the house is an importantelement to consider. Serious aro-matherapy research has proved thatthis aspect should be carefully con-sidered because olfactory memorieslast far longer than the patient’s othertypes of memory.16

We have said that architecturalspace is significant. To date, no stud-ies have been conducted regardingthe importance and influence ofarchitecture and the eventual treat-ment of Alzheimer’s disease. We do,however, know that a number ofancient traditions incorporated whatis known as sacred geometry intotheir customs, and that there is now abranch of architecture exploringhealing architecture—a spatialdesign that contributes to theimproved well-being of body andmind. The prestigious AmericanInstitute of Architects now has a sec-tion dedicated to this forward-look-ing concept.17 In Montreal, architectFrédéric Klein has designed an inno-vative complex18 for McGillUniversity’s Health Centre. It iscomposed of various clusters ofunits where a warm, comfortableatmosphere enhances patients’ feel-ings of security. Heart-shaped struc-tures form a lotus-flower configura-tion, which is an architectural con-cept based on the invisible structuralcomponent of sacred geometry.

We have to rethink architecturalspace using orientation, volume, andlighting to produce a special atmos-phere which, according to Klein,19

makes employees feel more produc-tive and patients more alive. Thisconcept is as old as time itself forpractitioners of Chinese Feng Shuiand its Vedic equivalent Sthapatya,20

but in the Western world the notionis still relegated to the area of sci-ence fiction. There is, however, oneray of light: the CanadianGovernment has for some yearsbeen subsidizing research into theimpact of architecture on health.21

Ideal AD Home




DevelopmentPlanning the ideal Alzheimer homeshould take three essential compo-nents into account: healing architec-ture, more human resource manage-ment and artificial intelligence appli-cations. The first would be architec-ture based on sacred geometry,because this could reduce stress,enhance a feeling of safety. and resultin a marked improvement in thequality of life of patients, employees,and families. Only too often, whenplanning an extended-care centre, weare content to calculate squarefootage, sinks and toilets. It may nowbe time to ask ourselves questionsabout another approach to the archi-tectural space surrounding us—anessential yet invisible component.

The second most important ele-ment to be incorporated into theideal Alzheimer home would behuman-resource management basedon respect for the individual. Manypublic and private extended-carecentres, even though luxurious, arestaffed by poorly paid, insufficientlytrained, overworked employees. Thepublic system operates in this waybecause of savings achieved; the pri-vate system because of profitsgained. This ignores the fact thatAlzheimer’s patients, who are moreemotional, very quickly becomeattached to their caregivers andadjust poorly to changes in person-nel. Human-resource managementin an Alzheimer home must there-fore ensure that there is no (or verylittle) turnover in staff. “All employ-ees must be trained to avoid impos-ing the slightest constraint onpatients. That is one of the keys tosuccess in this method,” states Dr.Parmentier, the initiator of the

Jardins d’Asclépios in the FrenchJura. The prosthetic approach is def-initely the one to be preferred,because it has proven its worth.However, if the board of directorsdoes not provide decent salary con-ditions for employees (withoutwhich there will be a constantturnover), all of the lip service paidto the patient-focused approachbecomes a barefaced fabrication.

The third component of the idealAlzheimer’s home should be theextensive use of surveillance technol-ogy and artificial intelligence toimprove care and patient manage-ment. The market potential for thiscutting-edge industry is enormous.Several technologies are now avail-able, ranging from intelligent cloth-ing to muscle-movement detectors inhospital beds,22 together with radio-frequency microchips (RFID)23 andautomated thinking robots.24 TheEmfit Corporation25 in Finland hasequipped several Finnish Alzheimerhomes with a number of its productsthat help control wandering, acci-dents and human error. The In TouchHealth Company26 is pioneeringremote presence technology, similarto remote-control computer pro-grams. Its newest addition is a robotcompanion for seniors. Intel’sProactive Health Research Center27

and the Robotics Department ofMitsubishi Heavy Industries28 areworking on artificial intelligence pro-totypes to make the interface betweencomputer and patient more user-friendly. Their goal is to be able tointeract with patients and thus allevi-ate their feelings of isolation, fear andboredom. The mention of surveil-lance systems and avant-garde tech-nologies like RFID raises concern in

the general public regarding the pro-tection of privacy, and rightly so, butthe use of these same technologies inthe context of an Alzheimer homecould only have a positive impact onpatients’ quality of life as they nearthe end of their lives.

The philosophy of the Alzheimer’sMovement states that the personaffected maintains an intense emo-tional relationship with those aroundhim, and needs stimulation appropri-ate to his potential and his need forfeelings of self-worth and safety.29

That’s all very well, but what actuallyhappens in real life? When planningan Alzheimer home, care must betaken not to pay attention solely to itscost-effectiveness, consequently leav-ing the human aspect and patientapproach behind. It would be prefer-able to plan and budget based on thecost of the three components men-tioned above from the very start. Theextensive use of technology wouldallow us to better train and better paythe most important link in anAlzheimer home: the employees. Inaddition, specialized artificial intelli-gence interfacing with patients couldprobably help reduce the depressionthat, according to certain studies,affects 80% of seniors in the homes or“virtual waiting rooms for death” thatresidences represent today.

There is little doubt thatAlzheimer homes will multiply rap-idly over the next few years.Therefore, the concept must berefined right now, incorporating aproven prosthetic approach, healingarchitecture, human-resource man-agement based on respect, and arti-ficial intelligence adapted to geron-tology. Who, in Canada, will standas the pioneer for this field?

The Canadian Review of Alzheimer’s Disease and Other Dementias • 24.1

Ideal AD Home

References:1. Epp TD. Person-centred care: a vision to

be refined. The Canadian AlzheimerDisease Review 2003; 5:14-17.

2. ADARDS Centre, Australia. Available at:http://www.adardsnursinghome.com.au/

3. Resources for Senior Living, the HavenGroups. Available at: http://www.rsl-al.com/.

4. “Salins-les-Bains: bientôt la maisonAlzheimer.” Archives de la Voix du Jura.Available at: http://www.voixdujura.fr/archives/voir_archive.asp?archive=992&dossier=&chronologie=oui&page=67.

5. “Dorothy Macham Home.” SunnybrookHealth Sciences Centre. Available at:http://www.sunnybrook.ca/programs/neurosciences/dorothymachamhome.

6. “Strathcona Alzheimer Care Centre.”The Capital Care Group. Available at:http://www.capitalcare.net/Centres/sacc.htm.

7. “Marguerite Merette: Prendre soin dansun centre de soins de longue durée.”Unité prothétique, St-Brigid’s Home,Quebec. Available at: http://webperso.mediom.qc.ca/~merette/brigid.html.

8. “Maison Carpe Diem.” SociétéAlzheimer de la Mauricie. Available at:http://www.alzmauricie.org/carpe.htm.

9. “Maison Mémoire du Coeur.” Availableat:http://www.maisonmemoireducoeur.ca/

10. “Maison Fleur-Ange.” Société Alzheimerde l’Outaouais Québécois. Available at:http://www.saoq.org/maison_fleurange.htm

11. Includes San Secundo Memory Clinic,Turin (source: Médéric AlzheimerFoundation newsletter, March-April2003 and the Queen Sophia FoundationAlzheimer Project Complex, Madrid(source: Diario Médico, Spain).

12. “What is your building saying?” IdeasInstitute. Available at: http://www.ideasinstitute.org/article_021103_a.asp.

13. Calkins MP, Marsden JP. Home is wherethe heart is: designing to recreate home.Alzheimer Care Quarterly 2000; 1(1):8-16.

14. “Le Cantou.” Cantou Saint George,Maison de retraite en Normandie.Available at: http://perso.wanadoo.fr/can-tou.saintgeorges/Le_cantou.htm.

15. “Elder Care.” Bernstein & Associates,Architects. Available at:http://www.bernarch.com/ElderCare.htm

16. “La Aromaterapia.” FundaciónAlzheimer España. Available at:http://www.fundacionalzheimeresp.org/debate/aromaterapia.php

17. “Healthcare architecture.” TheAmerican Institute of Architects.Available at: http://www.aia.org/aah_default

18. Bryan Lawson. Healing architecture.Architectural Review. March 2002.Available at:http://findarticles.com/p/articles/mi_m3575/is_1261_211/ai/84670328. FredericKlein. Senior architect, Regis CoteAssociation, Montreal.

19. Klein Thibodeau Henderson.Architecture and Design, Well-being is afunction of spatial energ. Available at:http://www.hermanmiller.com/CDA/SSA/CaseStudies/0,1598,a10-c78-k42,00.html

20. Sthapatya, transcendental meditationand architecture. Available at: http://www.sidhadorp.nl/sthapatya/index.html

21. Medicine by Design Project, funded byCIHR#SSHR, McGill University.Available at: http://www.arch.mcgill.ca/mbd /pdf/DAWSON_project_outline_pdf.

22. Emfit, Finland. Available at: http://www.emfit.com

23. Medical RFID tagging could save lives.Available at: http://www.online-ambu-lance.com/articles/doc/13/grp/Senior/pg/1/art/Medical_RFID.htm. VerichipCorporation. Available at:http://www.4verichip.com/applica-tions.htm

24. Martha Pollack, a professor in theUniversity of Michigan ElectricalEngineering Department, has devel-oped an alarm, called the Auto-minder,that can recognize when a person iseating and remind them to take theirmedication. available at: http://www.spacedaily.com/news/robot-04h.html

25. Emfit Corporation, Helsinki, Finland,research and article. Available at:http://www.emfit.com/publications

26. Articles on In Touch Health Companyresearch. Available at: http://www.intouch-health.com/articles.html

27. Deshman E, Carrillo Maria C. Perspectiveon everyday techniques for alzheimer’scare: research Findings, directions andchallenges. Alzheeimer’s and Dementia,Volume 3, Issue 3, July 2007, pg 227-34.

28.The Wakamaru robot has been specifi-cally developed to simulate a humancompanion. It has already proved itsworth when used with the elderly.Theproject is sponsored by the AARPGlobal Aging Program. Available at:http://www.aarp.org/international/agin-gadvances/innovations/Articles/a2004-09-14-homecarerobot.html

29. Philosophy and Common Vision,Alzheimer Movement of Quebec,Annual General Meeting 25, Nov. 2000,Report of Clinical Committee written byMartine Lecoeur.


Boomers Fueling Dementia CrisisNumber of people with Alzheimer’s disease or a related dementia to double

News from the Alzheimer Society of Canada

This Alzheimer Awareness Month, theAlzheimer Society released sobering new sta-

tistics on the prevalence of Alzheimer’s diseaseand related dementias in Canada; statistics thatpredict an alarming increase of dementia over thenext generation.

According to the Alzheimer Society, there arecurrently about half a million Canadians livingwith Alzheimer’s disease or a related dementia—a number that is expected to increase to between 1 and 1.3 million within a generation (25 years). Infact, the Society says, within just five years therecould be as many as 250,000 new cases of demen-tia in Canada.

“The Canadian population is aging, fueled by ageneration of baby boomers just starting to entertheir retirement years,” says Scott Dudgeon, CEOof the Alzheimer Society of Canada. “Unless weput our minds to it, and take action now,Alzheimer’s disease and related dementias mayprove to have the highest economic, social andhealth-cost burden of all diseases in Canada.”

The new data is the first to be released from thestudy, “Rising Tide: The Impact of Dementia onCanadian Society.” Commissioned by theAlzheimer Society, Rising Tide studies the impactof dementia in great depth, with a view to under-standing the current demographic and epidemio-logic profile of the disease. Later in 2009, newdata on the economic and social impact ofAlzheimer’s disease and related dementia will bereleased.

“Every Canadian has a reason to care,” says JimMann, a Vancouver resident living with Alzheimer’sdisease. “Alzheimer’s disease and related dementiasare a tragic reality for a rapidly growing number ofCanadian families. The time to act is now.”

According to the data released this year, Mannis just one of more than 71,000 people youngerthan 65 living with Alzheimer’s disease or a relat-ed dementia. This information is changing the waypeople view these illnesses, and is helping to put anew face on dementia.

“When I tell people about my diagnosis,many tell me I am too young to haveAlzheimer’s disease. The sad truth is that I amnot too young, and neither are the thousands ofother Canadians under the age of 65 already liv-ing with Alzheimer’s disease or a relateddementia,” adds Mann.

Other highlights from the initial findings of theRising Tide study include:• Of the 500,000 people affected, more than

71,000 of them are younger than 65 years, andapproximately 50,000 of them are youngerthan 60 years.

• 1 in 11 people older than 65 years currentlyhave Alzheimer’s disease or a related dementia.

• Women make up 72% of Canadians withAlzheimer’s disease.

• Within a generation (25 years), the number of people living with Alzheimer’s disease or arelated dementia could reach between 1 million and 1.3 million.


“As it stands today, the number of Canadiansliving with Alzheimer’s disease or a relateddementia will more than double within a genera-tion,” says Ray Congdon, Volunteer President ofthe Alzheimer Society of Canada. “This new dataonly reinforces the fact that Alzheimer’s diseaseand related dementias are a rising concern in thiscountry, an epidemic that has the potential to over-whelm the Canadian healthcare system if changesare not made today.”

The Alzheimer Society is issuing a call to actionfor all Canadians in 2009, asking them to do whatthey can to help turn the tide, and ease the impact of

Alzheimer’s disease and related dementias. Theseactions can include making a donation to supportcritical research, raising their voice to this country’sparliamentarians, and doing the things they can tohelp reduce their own risk of developing dementia.

The Alzheimer Society has been providinghelp and hope for more than 30 years in com-munities across Canada, but they can’t do italone. The Society needs every Canadian, andevery level of government, to take action toensure the necessary services, support andresearch dollars are in place to address thisgrowing health and societal issue.

The Alzheimer Society is the leading, nationwide health organization for people affected by dementiain Canada. The Society is a principal funder of Alzheimer research and training, provides enhancedcare and support to people with the disease, their families and their caregivers, and is a prominentvoice within all levels of government. Active in more than 140 communities across Canada, theSociety is also a key player in Alzheimer’s Disease International, an organization at the forefront ofworld wide efforts to fight dementia.

For more information on the “Rising Tide: The Impact of Dementia on Canadian Society” study,the Alzheimer Society, or how to raise your voice and become an Alzheimer Advocate, please visitwww.alzheimer.ca

the canadian review of - sta healthcare … canadian review of volume 12, number 1 † february 2009...

Documents