Understanding the Phenomenon of

Undiagnosed Dementia
Halima Amjad, MD, MPH
Assistant Professor of Medicine
Division of Geriatric Medicine and Gerontology

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Objectives

• Identify rates of dementia diagnosis and patient/family

awareness of dementia

• Consider implications of unrecognized dementia for

patients, families, and healthcare systems

• Understand the current landscape of dementia

diagnosis and what we can do to improve diagnosis
and care

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Clarification of terminology

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 Spectrum of dementia care

4
National Quality Forum, 2014; http://www.qualityforum.org/Prioritizing_Measure_Gaps_- 4
_Alzheimers_Disease_and_Related_Dementias.aspx
 My inspiration

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https://www.johnahartford.org/blog/view/dementia-caregiving-returning-to-the-village/
 Challenges

• Prior to diagnosis
– Understanding personality changes
– Building and buying new practices
– Related evaluations and treatments
– Pursuing early evaluation alone
• Post-diagnosis
– Caregiver support
– Dementia-centered medical care
– Navigating driving and working
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 Potentially unsafe activities

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Amjad et al, J Am Geriatr Soc, 2016
 Findings

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https://hub.jhu.edu/2016/06/02/risks-of-not-diagnosing-dementia/
National Health and Aging
Trends Study (NHATS)
• Ongoing observational study of Medicare
beneficiaries aged 65+
• 7,609 community-dwelling older adults in 2011
– Excludes 636 nursing home or facility residents
– 583 proxy respondents
– 2,017 self-respondents received help from family/companion
• Annual sociodemographics, functional abilities,
activities, health conditions, physical capacity,
environment, help, cognition & dementia status

www.nhats.org 9
 Dementia Classification in
NHATS
• Report of physician diagnosis of dementia or
Alzheimer’s disease

• AD8 Dementia Screening Interview administered to

proxy respondents

• Cognitive tests administered to all self-respondents

and participants with proxy if proxy agreed
1) Memory
2) Orientation
3) Executive function

• Sensitivity 66% and specificity 87% compared to

ADAMS classification
Technical paper available at www.nhats.org 10 8
Dementia Status in 2011

Probable dementia Probable dementia

with reported without reported
diagnosis (n = 457) diagnosis (n = 581)

Possible dementia No dementia

(n=996) (n=5575)

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 Prevalence of Potentially Unsafe
Activities by Dementia Status
Probable Probable Possible No
Dementia Dementia (No Dementia Dementia
(Reported Dx) reported Dx)
Caregiving 3.8 7.3 12.3 21
Drives 16.6 27.9 59.4 84.2
Prepares hot
16.8 42.2 56.8 72.4
meals
Handles finances 12.4 29.4 59.8 74.8
Manages
21.7 49.5 78.5 92.8
medications
Alone during MD
10.3 29.2 51.6 69.9
visits
Smokes 6.1 5.2 8.2 8.9

Amjad et al, J Am Geriatr Soc, 2016 10

 Dementia diagnosis and safety

• 56% of older adults meeting criteria for probable

dementia do not report a physician diagnosis of
dementia.
– May be undiagnosed.
– Person/family may be unaware of or not accepting
of dementia diagnosis.
• This group is more likely to engage in potentially
unsafe activities compared to persons with
reported diagnosis.
– May be less functionally impaired (but do report
difficulty with activities, cognitive test scores are
similar) and able to safely engage in activities.
Amjad et al, J Am Geriatr Soc, 2016 12
 • Objective: To identify sociodemographic, behavioral,
functional, medical, and health utilization characteristics
associated with formal diagnosis of dementia and
awareness of dementia diagnosis.

• 585 NHATS community-dwelling participants with

probable dementia and 3 years of continuous, fee-for-
service Medicare claims prior to 2011.

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Amjad et al, J Gen Intern Med, 2018
 • 58.7% undiagnosed
or unaware
• 31.8% patients or
families unaware
among those
diagnosed

Amjad et al, J Gen Intern Med, 2018 19

 How common is undiagnosed
dementia?
• Systematic review of global dementia
detection rates: 61.7% undetected
worldwide, 60.7% in USA

• About 1/3 of diagnosed individuals are

unaware of the diagnosis.

Lang L et al. BMJ Open. 2017;7(2) 16

Stites et al. J Gerontol B Psychol Sci Soc Sci. 2017; 72(6), 974-985.
 Why are individuals
undiagnosed or unaware?

-Ability to -Attitude -Lack of training -Lack of time

understand -Awareness and or knowledge -Lack of access
-Denial, education -Lack of to specialists or
reluctance -Symptom confidence or support
-Shame misattribution comfort -Need for better
-Lack of -Lack of screening and
perceived benefit perceived benefit diagnostic tools
-Communication
Bradford et al. Alzheimer Dis Assoc Disord. 2009; 23(4): 306–314. 17
Mansfield et al. Gerontologist. Advance Access online June 25, 2018
So what?

$$$

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 Older adult perspectives

• Awareness of diagnosis and prognosis associated with

worse self-reported quality of life.
• A majority of persons with (85%) and without cognitive
impairment (91%) prefer to be informed about a dementia
diagnosis.
– For: Autonomy, opportunities for planning, look for treatment
options, obtain information
– Against: Upset/depressing, no benefits in knowing, knowing might
worsen symptoms, fear of committing suicide

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Stites et al, J Gerontol B Psychol Sci Soc Sci, 2017; van den Dungen et al, Int Psychogeriatr, 2014
 Older adult perspectives

Indiana University, Regenstrief Institute, Inc

• 47% of 434 patients screen positive for dementia refused
further assessment
• Living alone, greater perceived stigma associated with
refusing diagnostic assessment.
• Older adults who perceive less benefit of screening more
likely to refuse screening (less likely to agree with
screening for other conditions too).

Boustani et al, Int J Geriatri Psychiatry, 2006; 21: 556–563. Fowler et al, Alz & Dementia: Diagnosis,
Assessment, & Disease Monitoring, 2015; 1(2): 236-241. Fowler et al, Journal of Aging Research, 2015; Article 20
ID 423265
 • Several brief screening instruments can adequately detect
dementia.
• Average effects of benefits observed in treatment trials are
small and in people with moderate (not mild) dementia.
– Clinical importance and applicability to screen-detected people with
cognitive impairment is not clear.
• No trial evidence that addresses whether screening for or
early diagnosis of cognitive impairment improves patient,
family, or clinician decision making or improves patient,
caregiver, or societal outcomes.
• Current evidence is insufficient to assess the balance of
benefits and harms of screening for cognitive
impairment.
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Moyer et al. Ann Int Med, 2014
 Thinking back

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National Quality Forum, 2014 22
 Moving toward earlier
diagnosis anyway

Medicare Annual Wellness Visit

https://aspe.hhs.gov/report/national-plan-address-alzheimers-disease-2018-update
https://www.healthypeople.gov/2020/topics-objectives/topic/dementias-including-alzheimers-disease/objectives 23
https://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/Downloads/AWV_Chart_ICN905706.pdf
 More to come…

• Indiana University Dementia Screening Trial (IU-

CHOICE) results pending.
– Outcomes include quality of life, depression, anxiety;
healthcare utilization, advance care planning

• USPSTF currently updating recommendations on

screening for cognitive impairment.

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 Reflections

• Prior to diagnosis
– Understanding personality
changes
– Building and buying new
practices
– Related evaluations and
treatments
– Pursuing early evaluation
alone
– Patient v. family need to
know
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 Where do we stand?

• More work needed to understand a complex issue in

absence of disease-modifying treatments.
• High quality medical care: Doing the right thing, at the right
time, in the right way, for the right person—and having the
best possible results.
– Balancing the patient and the family
• Dementia diagnosis and awareness must be linked to care,
treatment, and support.
– Effective dementia care management and care coordination models
(Aging Brain Care Program, MIND at Home, UCLA Alzheimer’s and
Dementia Care Program) not readily available or reimbursed
– Primary care and community resources
• Reducing stigma and improving education important!
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Agency for Healthcare Research and Quality, US Department of Health and Human Services. Your guide to choosing
quality healthcare: a quick look at quality. Available at: www.ahrq.gov/consumer/qnt/qntqlook.htm.
 Resources

• https://www.nhs.uk/conditions/dementia/e
arly-diagnosis-benefits/
• https://www.nia.nih.gov/health/diagnosing
-dementia

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Contact information

• Halima Amjad, MD, MPH

– hamjad1@jhmi.edu
• Johns Hopkins Media Relations
– Raigan Wheeler, rwheel13@jhmi.edu

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