Dementia Diagnosis

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This tool is designed to help clinicians understand, assess, and diagnose people in primary care living with dementia, while providing additional information on the most common subtypes (Alzheimer’s Disease (AD), Vascular Dementia (VaD), Frontotemporal Dementia (FTD) and Dementia with Lewy Bodies (DLB)). This tool integrates best-practice evidence with clinical experience, and makes reference to relevant existing tools and services wherever possible. 

Important principles1-3:
  • Engage a holistic and person-centred approach that involves both the person living with dementia (PLWD) and their care partners while considering PLWD values, culture and communication preferences. 
  •  Adopt a strength-based approach that highlights the PLWD competencies, abilities and possibilities for well-being. Discuss healthy behaviours and encourage the PLWD to remain positive.  
  • Encourage care partner participation (with PLWD consent). Ensure a safe and inclusive involvement while providing care partner education.  
  • Build trust and ensure culturally safe and compassionate communication when disclosing a diagnosis.  
  • Use person-centred, clear and plain language when engaging with PLWD, care partners or healthcare providers to reduce stigma and avoid negative labelling. 
  • Validate emotional reactions and respond with empathy and patience. Offer referrals to appropriate supports for further emotional psychosocial care. 

Dementia New

Dementia is a clinical syndrome characterized by neurocognitive degeneration resulting in progressive deterioration in cognitive function (e.g., memory, executive functions, attention, language, social, cognition and judgement, psychomotor speed, visuoperceptual or visuospatial abilities), often accompanied by behavioral changes and impairments in functional abilities. It is not a single disease but rather a collection of symptoms caused by various underlying pathologies, including4

  • Alzheimer’s disease (AD)
  • Vascular dementia (VaD)
  • Frontotemporal dementia (FTD), and
  • Dementia with Lewy bodies (DLB).

Globally, dementia represents a growing public health challenge. In 2019, an estimated 57 million people were living with dementia, and this number is projected to nearly triple by 20504.

Assessment algorithm2,3,5-8

MCI vs dementia2,5
Click for details

Assessment

  • Gather input from the person living with dementia (PLWD) and their care partners to obtain a detailed history, including:  
    • Medical & personal history: Current illnesses, medication history, family and social history.  
    • Symptoms: cognitive, functional, behavioural/neuropsychiatric, sensory and motor (new vs chronic), and overall level of impairment. 
    • Onset, tempo & impact: Changes in ADLs/IADLs, interpersonal relationships, safety and care needs.
    • Potential triggers: Relationships between events and presenting symptoms.
    • Sleep: Assess patterns (e.g., duration, insomnia, daytime sleepiness, napping, REM sleep behavioural disorder); refer to sleep clinic if sleep abnormalities are noted. 
    • Hearing & vision: Screen for impairment- corrective intervention may aid in cognition.
  • Risk factor assessment
    • Evaluate dementia-related risks: 
      • Neurodegenerative/cerebrovascular: Stroke, Parkinson’s, hypertension, diabetes 
      • Psychiatric: Depression, anxiety (especially late-onset)
      • Lifestyle/other: Substance use, recent delirium, financial vulnerability  
    • At risk indicators/red flags:
      • Reported cognitive symptoms by PLWD or informant
      • Unexplained IADL decline,  
      • Sudden life changes (e.g., routine, activities, personality) 
      • Missed appointments, medication mismanagement, 
      • Reduced self-care,  
      • Injury or acute episodic illness,
      • Victimization of financial scams 
      • New onset later-life behavioural changes (e.g., anxiety or depression)  
  • If negative corroborative history: 
    • Reassure and arrange follow-up if symptoms evolve 
  • If positive corroborative history 
    • Follow-up as needed (at least annually) 
    • Refer to memory clinic 
    • Proceed with further assessment as needed (e.g., labs, imaging and neuropsychiatry testing) 

  • Cognitive concerns: use validated assessments of cognition, ADLs and neuropsychiatric symptoms as appropriate.  
  • Significant memory concerns: use validated cognitive, behavioural and functional assessments as appropriate. See validated assessment tool section below. 
  • Subjective cognitive decline (SCD) cognitive concerns but without objective cognitive changesor obvious impairment to IADLs: 
    • Rule out reversible causes (e.g., delirium, depression).  
    • Assess psychiatric symptoms (especially symptoms of depression and anxiety) and refer if needed 
    • Consider using the SCD-Q part 1 (MyCog) 
    • Provide WHO recommendations for the prevention of dementia 
    • Follow up every 1-2 years 

Practice point3: Assess safety-related risks (e.g., fire hazards, unsafe driving) and implement strategies to support risk reduction.

  • Initiate imaging if any of the following are present: 
    • Cognitive symptoms within the past 2 years (regardless of progression rate), 
    • Unexpected/unexplained decline in cognition or functional status  
    • Recent and significant head trauma 
    • Unexplained neurological manifestations (e.g., new onset severe headache, seizures, Babinski sign, etc.) at onset or during evolution (including gait disturbances), 
    • Cancer history (especially if at risk for brain metastases), 
    • Risk of intracranial bleeding, 
    • Symptoms suggest normal pressure hydrocephalus, or  
    • Significant vascular risk factors 
  • Preferred modality 
    • MRI (3T over 1.5T) is preferred over CT, for its sensitivity to vascular changes, dementia subtypes and rare conditions.   
    • If MRI is performed, include the following sequences: 
      • 3D T1 volumetric imaging (with coronal views for hippocampal assessment) 
      • Fluid-attenuated inversion recovery (FLAIR) 
      • T2 (or susceptibility-weighted imaging (SWI) if available), and  
      • DWI sequences.  
    • If CT is performed, use a non-contrast CT and coronal reformations to better assess hippocampal atrophy  

Practice points2

  • While MRIs are preferred for their superior sensitivity, CTs are often more accessible and offer faster turnaround, making them useful in remote areas or for quickly ruling out concerns. In time-sensitive cases, consider starting with a CT and follow up with an expedited MRI if needed. When ordering a CT, specify the focus on the requisition for the radiologist (e.g., temporal lobe volume). Check for recent imaging to avoid duplication and limit radiation exposure. 
  • Avoid dismissing structural findings as age-related without full context.  Minimal/mild and diffuse cerebral atrophy, leukoaraiosis, and isolated microhemorrhages can occur with normal aging, but may also indicate underlying conditions such as Alzheimer Disease and related dementias (ADRD) or VCID.

Validated assessment tools

Cognitive, functional, behavioural and informant-based tools3-6,8,10

*May be subject to copyright 

Practice points2,4-6:

  • When selecting tools, consider the need for comprehensive assessment vs efficiency/time, accuracy, cost, training requirements, PLWD/ care partners cultural and literacy needs, and clinician confidence. 
  • Always support cognitive tests with a corroborative history, focused exam and the PLWD overall risk profile- do not rely on test alone. 
  • Combining cognitive, functional and behavioural assessments with informant reports increases diagnostic accuracy.  
  • When cognitive assessments are inconclusive (e.g., symptoms reported but cognitive tests appear normal), neuropsychological evaluations are recommended (e.g., delayed free and cued recall/recognition, attention, executive function, visuospatial function and language).  
  • Routine screening of asymptomatic individuals is not recommended.  

Diagnosis

Diagnostic criteria (NIA-AA)2: 

  1. Cognitive or behavioural symptoms that:
    • Interfere with work of usual activities;
    • Represent a decline from a previous level of functioning;
    • Are not due to delirium or major psychiatric disorder. 
  1. Evidence of impairment in two or more of the following domains:
    • Memory
    • Reasoning and judgement
    • Language
    • Visuospatial function
    • Personality or behaviour 
  1. Objective evidence from standardized testing 
  1. Functional impact on independence in everyday activities 
  1. Clinical findings not better explained by other neurologic, psychiatric, or systemic conditions. 

These criteria align with the DSM-5 criteria for major neurocognitive disorder, which also emphasize functional decline and exclusion of delirium or psychiatric causes. 

Common dementia subtypes New

Subtype overview2-11

Subtype

Key clinical features*

Risk factors (RFs)

Alzheimer’s Disease (AD)  

Most common (60–80% of all dementia cases).

 

Associated with amyloid-beta plaques, tau neurofibrillary tangles, and neurodegeneration.  

  • Early symptoms: memory impairment 
  • Gradual symptoms: language deficits, visuospatial dysfunction, executive impairment, behaviour changes (e.g., mood, apathy) 
  • Later symptoms: psychosis, irritability, aggression, confusion and seizures 
  • Insidious, progressive onset 
  • Age, genetic susceptibility, vascular comorbidities (e.g., hypertension, diabetes), substance use (e.g., alcohol) and lifestyle factors. 
Vascular Dementia (VaD) 

2nd most common; frequently mixed with AD (pure VaD is relatively uncommon). 

 

Linked to cerebrovascular insult (e.g., ischemic stroke, small vessel disease, hemorrhage). 

  • Variable presentation 
  • Early symptoms: prominent executive dysfunction, slowed processing speed 
  • Other features depend on vascular injury location and severity 
  • Stepwise decline 
  • Non-modifiable RFs: advanced age, gender, ethnicity, genetics 
  • Modifiable RFs: hypertension, diabetes, dyslipidemia, obesity, smoking, physical activity, excessive alcohol consumption, low social contact etc.  
Frontotemporal Dementia (FTD) 

Most common cause of dementia in individuals <65 years. 

 

Characterized by frontal and/or temporal lobe atrophy. 

  • Variable presentation 
  • Early symptoms: behavioural changes (e.g., cognitive or emotional empathy) or language changes (e.g., word-finding difficulty, effortful speech, comprehension disorders), executive dysfunction 
  • Relatively preserved memory, psychomotor speed and visuoperceptual/ visuospatial skills in early stages 
  • Behavioural variant (bvFTD): disinhibition, apathy, personality changes 
  • Primary progressive aphasia (PPA) variants: speech/language difficulties 
  • Insidious, progressive onset 
  • Often overlaps with psychiatric disorders  
Dementia with Lewy Bodies (DLB) 

2nd most common degenerative dementia in individuals >65 years. 

 

Characterized by the accumulation of alpha-synuclein inclusions (Lewy bodies) within cortical neurons. 

  • Fluctuating cognition 
  • Recurrent visual hallucinations 
  • REM sleep behavior disorder 
  • Spontaneous parkinsonism 
  • Relative progression of medial temporal lobes compared to AD 
  • High antipsychotic sensitivity (creating severe adverse reactions) 

*Features may not be present in all individuals 

Specialist referral may be beneficial in subtype differentiation if the PLWD presents with non-typical AD or there is suspicion of other subtypes (e.g., VaD, FTD, DLB)3.

Subtype diagnostic criteria

After a full assessment including a thorough clinical history, risk factor assessment, cognitive assessment, ordering imaging and labs, a diagnosis of probable AD typically includes:

  • Insidious onset and progressive course of memory and/or other cognitive deficits
  • Prominent amnestic presentation (impaired learning and recall of new information)
  • Supportive evidence is also required from several test results
    • Hippocampal atrophy on MRI
    • CSF: ↓ Aβ42, ↑ total tau/p-tau
    • Positive amyloid PET
    • If magnetic resonance imaging (MRI) is not available or is contraindicated, computed tomography (CT) should be obtained.
  • Differential diagnosis: Rule out other causes of dementia and confirm AD pathology through biomarkers if uncertain

Use CSF or PET biomarkers only when diagnosis remains unclear after standard workup in collaboration with dementia specialist.

Do not base diagnosis of AD solely on the results of CT or MRI scans without clinical correlation.

After a full assessment including a thorough clinical history, risk factor assessment, cognitive assessment, ordering imaging and labs, a diagnosis of VaD includes: 

  • Cognitive decline in ≥2 domains (executive, memory, language, visuospatial) compared to a previous baseline 
  • Functional impairment in IADLs or ADLs independent of motor deficits 
  • Neuroimaging evidence: 
    • Stroke or vascular lesions temporally related to cognitive decline 
    • White matter lesions, lacunes, cortical infarcts on MRI or CT

Be aware that young-onset vascular dementia has a genetic cause in some people. 

Do not base diagnosis solely on vascular lesion burden without clinical correlation. 

After a full assessment including a thorough clinical history, risk factor assessment, cognitive assessment, ordering imaging and labs, a diagnosis of FTD includes:  

  • Core clinical criteria for behavioral variant FTD:
    • Must show progressive deterioration in behavior or cognition by observation or clinical history (requires informant)  
    • Diagnosis of possible FTD requires ≥3 of: 
      • Behavioural disinhibition (socially inappropriate behaviour, impulsiveness, loss of social rules or decorum) 
      • Apathy or inertia 
      • Loss of empathy/sympathy (decreased affective resonance to the needs and feelings of others, diminished social interest, reduced interpersonal “heat”) 
      • Compulsive behaviours 
      • Hyperorality and dietary changes (food preference changes, increasing alcohol or cigarette consumption 
      • Executive dysfunction with preserved memory 
  • Probable FTD: 
    • All above, plus functional decline and typical frontotemporal imaging findings 
  • Definite FTD: 
    • Genetic confirmation or neuropathological diagnosis 

Consider specialist referral for FDG-PET or SPECT to differentiate FTD from other dementias if structural imaging is inconclusive. 

Do not rule out FTD solely based on the results of structural, perfusion or metabolic imaging tests. It is important to incorporate consider clinical correlation over time. 

After a full assessment including a thorough clinical history, risk factor assessment, cognitive assessment, ordering imaging and labs, a diagnosis of DLB includes the following DLB Consortium criteria: 

  • Core features (≥2 for probable diagnosis):
    • Fluctuating cognition with variations in attention/alertness 
    • Recurrent well-formed visual hallucinations 
    • REM sleep behavior disorder 
    • Spontaneous parkinsonism (bradykinesia, rigidity, tremor) 
  • Indicative biomarkers (if only 1 core feature is present): 
    • Abnormal DaTscan (↓ dopamine transporter uptake) 
    • Polysomnographic confirmation of REM sleep without atonia 
    • Reduced cardiac MIBG uptake 
  • Supportive biomarkers: 
    • Occipital hypometabolism on FDG-PET 
    • EEG: pre-alpha/theta activity 
    • Relative preservation of medial temporal lobe 

Probable DLB = 2+ core features, or 1 core + ≥1 indicative biomarker
Possible DLB = 1 core OR 1+ indicative biomarker with no core features 

If a diagnosis is uncertain and dementia with Lewy body dementia is suspected, consider specialist referral for a DaTSCAN (123I-FP-CIT SPECT). If unavailable, consider 123I-MIBG cardiac scintigraphy or polysomnography with EEG. 

Do not rule out DLB solely based on normal results of the above investigations. It is important to always consider clinical correlation. 

Consider the possibility of mixed dementias. Diagnosing one subtype does not rule out the presence of others; continue to assess for additional subtypes if clinical suspicion remains3.

  

Referrals New

Consider specialist referral if2,5,9,11

  • Presentation is atypical 
  • Early-onset or rapid progression 
  • Medication sensitivity concerns (e.g., neuroleptic reactions) 
  • Complex symptom management (e.g., parkinsonism, hallucination, sleep disturbances) 
  • Need for advanced assessment (e.g., biomarker testing, neuropsychology, detailed neuroimaging interpretation, detailed behavioural assessment, genetic counselling) if diagnostic uncertainty persists or there is suspicion of subtypes 

Practice point3: When considering referrals, consider PLWD goals, values, wishes and progression. Collaborate with PLWD and care partners to determine the most meaningful next steps. Options may include specialist consultation (e.g., neurology, geriatrics, psychiatry), memory clinics or interdisciplinary teams. Ensure community supports (e.g., the Alzheimer Society or Behavioural Supports Ontario (BSO)) are included where appropriate to provide education, counselling, and practical help for PLWD and care partners. Where possible, maintain continuity of care through clear communication and ongoing involvement.

Disclosing a diagnosis New

Once a diagnosis of dementia is made, it is important that the diagnosis is communicated to the person living with dementia (PLWD) and care partner(s) by the assessing primary care clinician or a healthcare practitioner on the PLWD care team.

Prior to initiating disclosure, ask the PLWD if they would like a care partner present during the process. This may include a family member, spouse, friend, neighbour, community member, religious personnel, substitute decision maker or power of attorney (POA). If the PLWD does not have a care partner or does not wish to have a care partner present, consider arranging for an allied health professional (e.g. social worker, nurse practitioner, case manager) to be present for disclosure appointments1

When communicating a diagnosis, instill hope by1:

  • Using a strength-based approach, focusing on the strengths, competencies, and abilities of the PLWD. 
  • Encouraging positivity and remaining hopeful despite the challenges. 
  • Emphasizing support options and ensuring a discussion of healthy behaviours and how to maintain or enhance wellbeing. 
  • Encouraging care partner(s) to remain positive and hopeful. Explain the prognosis, set expectations, and provide support options. 
  • Providing examples and resources on how people living with dementia are living well.  

Prior to initiating the disclosure process, identify any language needs of the PLWD and care partner(s) and if necessary, arrange a professional interpreter, interpretation tool(s) and/or other supports for hearing/language needs to ensure comfortability throughout disclosure.

Practice points1:

  • During the disclosure process, it is important for the PLWD and care partner (s) to engage with someone they trust. When possible, take time to build a relationship prior to the disclosure process occurring.  
  • Be mindful of dynamics between care partner(s) and PLWD and use clinical judgement to determine if the inclusion of the care partner(s) is in the best interest of the PLWD. If necessary, based on this judgement, arrange for an allied health practitioner or other relevant support (e.g. Office of the Public Guardian and Trustee) to support the PLWD through the disclosure process.
  • It is important to tailor the disclosure process to the PLWD and care partner(s). Consider providing culturally relevant resources to PLWD and care partners. See Alzheimer Society of Canada’s list of culturally specific resources for more information. 

Environment and appointment structure1

Approach the disclosure process as a minimum of two appointments:

Initial appointment

Explore PLWD and care partner(s)’s personal understanding of dementia. Allow time for an open conversation to hear, acknowledge and respond to any challenges previously experienced (e.g. misdiagnosis)

Communicate the diagnosis:

  • Elicit PLWD and care partner orientation 
  • Elicit perspectives on symptoms 
  • Present test results 
  • Provide diagnosis 

Provide preliminary information and correct misinformation:

  • Etiology 
  • Type 
  • Prognosis 
  • Be aware that some biological family members may request information on possible genetic implications of dementia 

Allow time for PLWD and care partner(s) to ask any initial questions

Emphasize well-being 

  • Provide a sense of hope and discuss how to enhance well-being and encourage healthy behaviours 

Plan for next steps 

  • Discuss treatment, support options, and relevant safety concerns 
  • Provide community and educational resources for support (e.g., personal, financial, legal affairs). Tailor supports to identified needs of the PLWD and care partner(s); consider providing both written and visual supports (e.g. informational videos) when necessary. 

Practice point1: The time needed for the initial appointment depends on the specific needs of the PLWD and care partner(s) and the time needed to address the essential topics. However, if all the identified essential topics cannot be covered in one appointment, provide reassurance that there will be sufficient time to address any remaining information, care planning and questions in follow-up appointments. 

At the conclusion of the initial appointment, ensure the following: 

A follow-up appointment is scheduled. Timings for follow-ups should be scheduled tailored to the needs of the person with dementia and their care partner(s). 

Shared a list of support team contacts (e.g. social worker, local Alzheimer Society). 

Follow-up appointment(s)

Provide more detailed information on identified topics 

Discuss items of importance to PLWD and care partner(s) 

Allow time for PLWD and care partner(s) questions 

Emotional supports1

The diagnosis disclosure process is highly emotional for everyone involved. Consider these dos and don’ts when approaching the disclosure process: 

DO:

  • Build rapport with PLWD and care partner(s) to establish trust 
  • Prepare yourself to have a difficult conversation 
  • Actively listen 
  • Show empathy, compassion, understanding, and sensitivity 
  • Be patient 

DON’T:

  • Rush the appointments 
  • Provide an overwhelming amount of information at one time 
  • Ignore concerns or questions from PLWD or their care partner(s) 

Practice point1,3: Remain attentive to non-verbal cues during disclosure appointments and engage with allied health professionals to identify tailored resources and support PLWD advocacy. 

Post-diagnostic supports4

After a diagnosis of dementia is disclosed, it is important to provide post-diagnostic support to the person living with dementia, and their care partner(s). Provide support with co-ordinated services and ensure that the needs of the person living with dementia, their care partner(s), and the relationship are met.  

Supports for persons living with dementia should include:
Supports for care partner(s) should include:
Supports for person living with dementia-care partner(s) relationship should include:
  • Assistance with daily living activities and maintaining ‘normal life’ in their communities (e.g. ability to maintain living at home, social activities, staying active), and balancing safety with remaining independent. 
  • Managing mood changes, stress, and distress (e.g. agitation, aggression) – see CEP’s Behavioural and Psychological Symptoms of Dementia tool for guidance. 
  • Support for memory loss and declining cognitive function (e.g. ability to retain short-term information). 
  • Education about dementia and/or sub-type of dementia. 
  • Advance care-planning. Ensure care-planning includes the values, wishes, goals and preferences of PLWD and their care partner(s). 
  • Emotional support. 
  • Psychosocial 
  • Education about dementia and/or sub-type of dementia. 
  • Access to services to for further information on dementia and/or sub-type of dementia. 
  • Coping strategies to preserve ‘normal life’ for both care partner(s) and person living with dementia. See CEP’s Behavioural and Psychological Symptoms of Dementia tool for guidance on care parnter burden. 
  • Family support. 
  • At home support. 
  • Involvement in advance care planning. 
  • Communication support so person living with dementia can effectively express their symptoms/needs and their care partner(s) can understand them, particularly in advanced stages of dementia. 
  • Development of self-management skills and referral to self-management resources. 
  • A well-defined care pathway and continuity of care. 
  • Access to specialists, and other healthcare practitioners in dementia care. 

Practice point4: Consider the post diagnostic support as part of a holistic assessment that includes any other risk factors and comorbidities and appropriately address supports for PLWD and their care partner(s). 

References New

  • [1]

    Alzheimer Society of Canada. National guidelines for disclosing a diagnosis of dementia: Enhancing disclosure through person-centred care. Toronto: ASC; 2024. 

  • [2]

    Atri A, Hendrix JA, Carrillo MC, Graff-Radford N, Jack CR Jr, Jicha GA, et al. Alzheimer’s Association clinical practice guideline for Diagnostic Evaluation, Testing, Counseling, and Disclosure (DETeCD-ADRD). Alzheimers Dement. 2024;1–32. 

  • [3]

    Expert Opinion.

  • [4]

    Scottish Intercollegiate Guidelines Network (SIGN). Assessment, diagnosis, care and support for people with dementia and their carers. SIGN publication no. 168. Edinburgh: SIGN; 2023. 

  • [5]

    Ismail Z, Black SE, Camicioli R, Chertkow H, Herrmann N, Laforce R Jr, et al. Recommendations of the 5th Canadian Consensus Conference on the diagnosis and treatment of dementia. Alzheimers Dement. 2020;16(8):1182-1195. 

  • [6]

    Fabrizi M, Grassini A, Cacciatore M, De Santi MG, Di Pucchio A, et al. Diagnostic framework for dementia: Recommendations from the Italian Dementia National Plan 2021–2023. Neurol Sci. 2024;45:1651–1663. 

  • [7]

    Schilling LP, Balthazar MLF, Radanovic M, Forlenza OV, Silagi ML, Smid J, et al. Diagnosis of Alzheimer’s disease: Recommendations of the Brazilian Academy of Neurology. Dement Neuropsychol. 2022 Sep;16(3 Suppl. 1):21–35. 

  • [8]

    Lee JS, Kim GH, Kim HJ, Kim HJ, Na S, Park KH, et al. Clinical Practice Guideline for Dementia (Diagnosis and Evaluation): 2021 Revised Edition. Dement Neurocogn Disord. 2022 Jan;21(1):42-44. 

  • [9]

    Souza LC, Hosogi ML, Machado TH, Carthery-Goulart MT, Yassuda MS, Smid J, et al. Diagnosis of frontotemporal dementia: Recommendations of the Brazilian Academy of Neurology. Dement Neuropsychol. 2022 Sep;16(3 Suppl. 1):36–48. 

  • [10]

    Barbosa BJAP, Siqueira Neto JI, Alves GS, Sudo FK, Suemoto CK, Tovar-Moll F, et al. Vascular cognitive impairment: Recommendations of the Scientific Department of Cognitive Neurology and Aging of the Brazilian Academy of Neurology. Dement Neuropsychol. 2022 Sep;16(3 Suppl. 1):49–68. 

  • [11]

    Parmera JB, Tumas V, Ferraz HB, Spitz M, Barbosa MT, Smid J, et al. Brazilian consensus on Parkinson’s disease dementia and dementia with Lewy bodies. Dement Neuropsychol. 2022 Sep;16(3 Suppl. 1):69–82.