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Healthy Aging, Frailty, and Dementia: Perspectives on maintaining quality of life
Susan Kirkland, PhD Lindsay Wallace, PhD Candidate
Dalhousie University
Alzheimer Society Annual MeetingHalifax, NS
October 21, 2019
Overview of Presentation
Susan: The big picture
• Aging populations globally and nationally
• Canadian Longitudinal Study on Aging
• Caregiving
• Cognitive function and decline with aging
• Dementia
Lindsay: Getting to the heart of the issue
• Frailty and Dementia
• Paving the way for interventions
Global Population Aging
Population aging
4
Life expectancy in CanadaStatistics Canada
Life expectancy at birth
0 10 20 30 40 50 60 70 80
Males
Females
Age
83.3
78.8
At age 65: Women 21.6 years (86.6)At age 65: Men 18.5 years (83.5)
* If born in 2007-2009
*
Source: CANSIM
Challenge: Live long AND well
Need to shift our focus:
• Mortality
• Morbidity
• Longevity
• Function
• Ability/Disability
• Well being
• Quality of life
• Autonomy/Independence
We require high quality data in order to understand and address evolving needs
The Canadian Longitudinal Study on Aging (CLSA)
• Strategic initiative of the Canadian Institutes for Health Research (CIHR
• Team of 3 principal investigators, more than 160 co-investigators from 26 institutions
• Aim is to provide infrastructure and build capacity for state-of-the-art, interdisciplinary, population based research and evidenced-based decision making
• Largest study of its kind to date in Canada for breadth and depth
Participants aged 45 to 85
at baseline (51,338)
Active follow-up every 3 years
CLSA Research Platform
2015 –2018
2010 - 2015TIME
20 Years
Baseline FU-1 FU-2 FU-3 FU-4 FU-5 FU-6
50,000 women and men aged 45 - 85 at baseline
TRACKINGTarget: 20,000Actual: 21,241
Randomly selected withinprovinces
COMPREHENSIVETarget: 30,000 Actual: 30,097
Randomly selected within 25-50 km of 11 sites
Questionnaire• By telephone (CATI)
Questionnaire• In person, in home (CAPI)
Clinical/physical testsBlood, urine
@ Data Collection Site
CLSA Participants in every province!
Winnipeg
VancouverVictoriaSurrey
Calgary
Hamilton
Ottawa
MontrealSherbrooke
Halifax
St. John’s
Home Interviews & Data Collection Site Visits
Recruitment & follow-up
Telephone InterviewsRecruitment & follow-up
Inclusion Criteria at Recruitment
• Residing in a Canadian province
• Not living on reserve or federal lands
• Not a full time member of the Canadian Armed
Forces
• Able to complete interviews in English or French
• Community dwelling
• Cognitively competent
CLSA Questionnaire Modules at Baseline
51,338 participantsD
emo
grap
hic
/Lif
esty
le
• Age
• Gender
• Education
• Marital status
• Sexual orientation
• Language
• Ethnicity
• Wealth/income
• Veteran Identifier
• Smoking, alcohol
• Nutritional risk
• Physical activity
• Health care utilization
• Medication use
• Supplement use
He
alth
• General health
• Women’s health
• Chronic conditions
• Disease symptoms
• Sleep
• Oral health
• Injuries, falls
• Mobility
• Pain, discomfort
• Functional status
• ADL, IADL
• Cognition
• Depression
• PTSD
• Life Satisfaction
Soci
al
•Social
•networks
•support
•participation
• inequality
•Online communication
•Care receiving
•Care giving
•Retirement status
•Labour force participation
•Retirement planning
•Transportation
•Mobility, Migration
•Built environments
•Home ownership
11
CLSA Data Collection30,000 visit a Data Collection Site
Cognitive Assessments: Neuropsychological Battery
Memory Executive function Reaction time
Biospecimen Collection: Blood Urine
Physical Assessments: Height, Weight, BMI Bone Density, Body Composition, Aortic Calcification Blood Pressure ECG Carotid Intimal-Medial Thickness Pulmonary Function Vision & Hearing Performance testing
3 Tablespoons of blood =
42 aliquots per participant
Acknowledging Personhood:
Use of Proxies in the CLSA• Obtaining information on study participants for as
long as possible is essential for the scientific validity of a longitudinal study
• Participants are often lost to follow-up for the very reasons (outcomes) that are important to study
• Participants have the right to maintain their involvement in research for as long as they desire
• Important to have an understanding of wishes for future participation if no longer competent or able
• Enabling proxies to continue participation in the CLSA meets both study and participant needs
Motivating Ethical Principles
• Consent is necessary for human subjects research (Respect for persons TCPS II; Declaration of Helsinki)
• There is a need to protect persons with diminished or fluctuating capacity to consent from abuse and exploitation
• There is also a need to avoid default exclusion of vulnerable populations from participating in research
• Respect for Persons incorporates the dual moral obligations to respect autonomy and to protect those with developing, impaired or diminished autonomy.
• While autonomy may be considered a necessary condition for participation in research, involving those who lack capacity to make their own decisions to participate can be valuable, just and even necessary.
• Important not to cut off this population from (immediate and prospective) benefits of research
• Two stage consent process: Participant and Proxy
• Participant Proxy Information Package and Consent given to
participants at age 70, or upon request
Part 1: Indicates preferences about future participation in the event that
participant is no longer able to participate on their own
Part 2: Name and contact information for a proxy decision
maker/information provider
• Providing a proxy is encouraged but not required
• Participant asked to inform proxy of their role
• Proxy decision maker/information provider contacted, Proxy
Consent is signed when Proxy Process is initiated
• Proxy Questionnaire completed by phone
The Proxy Process
CLSA as a Platform for Research:
Data and Biospecimen AccessFundamental tenets:
The rights, privacy and consent of
participants must be protected and
respected at all times
The confidentiality and security of data
and biospecimens must be
safeguarded at all times
Available to researchers and trainees at
public institutions
Must have approval from the CLSA
Data Sample and Access Committee,
and an accredited Research Ethics
Board
A Snapshot of CLSA Participants at Baseline
• Majority of participants self identify as White (92%), were born in Canada (84%) and most often speak English at home (79%)
• 4% self identify as Indigenous, including North American Indian, Metis, and Inuit
• 69% report being married or in a common-law relationship
• Overall, 6% report their annual household income as less than $20,000, but for women aged 75-85 it is 12%
The CLSA includes….
• Veterans
• Indigenous peoples off reserve
• Francophone population
• Ethnic groups
• Urban and rural populations
• People living with chronic diseases
• Caregivers
• Retirees
Care giving and receiving
Men Women
53.9%57.7%
Caregiving Intensity and Duration
• 3 levels of intensity:
• Low intensity = <5 hours/week
• Medium intensity = 5-19 hours/week
• High intensity = >20 hours/week
• 2 levels of duration
• Short term = <12 weeks
• Long term = >12 weeks
CLSA Caregivers: Duration & Intensity of care
100%
44.6%
21.2% 22.5%
22.8% 12.6% 8.4%
11.1% 5.8% 4.1% 11.5% 6.8% 4.0%1.4%
0.8%
1.0%
55.4%
55.4%
55.4%
55.4%
High (H)
Don’t know/Refused/Missing
LTHI
Don’t know/Refused/Missing
CLSA
CAREGIVERS
DURATION
INTENSITY
DURATION/INTENSITY
Short Term (ST) Long Term (LT)
Low (L) Medium (M)
STLI STMI STHI LTLI LTMI
Caregivers Non-Caregivers
n = 51,338
n = 22,895 n = 28,443
n = 10,874 n = 11,529
n = 11,696 n = 6,541 n = 4,321
n = 492
n = 427
n = 715
Don’t know/Refused/Missing
8%
19%
22%
7%
17%
40%
34%
37%
45%
53%
53%
35%
5%
8%
9%
3%
7%
12%
8%
9%
9%
6%
6%
4%
6%
5%
4%
5%
4%
2%
41%
22%
10%
26%
13%
8%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Short Term/Low Intensity
Short Term/Medium Intensity
Short Term/High Intensity
Long Term/Low Intensity
Long Term/Medium Intensity
Long Term/High Intensity
Spouse/partner Parent/in-law Child/in-law Sibling/in-law Other relative Friend, neighbour, other
Relationship to Care Recipient
86%
86%
83%
85%
81%
74%
83%
15%
14%
17%
15%
19%
26%
17%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Short Term/Low Intensity
Short Term/Medium Intensity
Short Term/High Intensity
Long Term/Low Intensity
Long Term/Medium Intensity
Long Term/High Intensity
Non-caregiver
Caregiving and Depression
Not clinically depressed Clinically depressed
89%
90%
90%
90%
87%
82%
89%
11%
10%
10%
10%
13%
18%
11%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Short Term/Low Intensity
Short Term/Medium Intensity
Short Term/High Intensity
Long Term/Low Intensity
Long Term/Medium Intensity
Long Term/High Intensity
Non-caregiver
Caregiving and Satisfaction with Life:
Neutral or Satisfied Dissatisfied
Cognitive Function: Immediate and
delayed recall decreases with age
The CLSA as a platform for the
study of Brain Health, Dementia
• Population norms
• Trajectories of cognitive change over the
lifecourse
• Transitions to cognitive impairment
• Algorithms for the detection of dementia
• Frailty and dementia
• Biomarkers, genetic markers
CLSA Research TeamOperations Committee and Scientific Leads
120M+ investment 2009-2020 fromCLSA Funders and Partners
Transforming Everyday Lifeinto Extraordinary Ideas
[email protected] funded by the Government of Canada
through CIHR and CFI, and provincial governments and universities
OutlineWhat is dementia & why is it
important?
What is frailty & how do we measure it
Why and how are frailty and
dementia related?
How is understanding frailty useful
more broadly (i.e. beyond dementia)
Prevention & treatment of frailty
Ageing and Alzheimer’s
disease
• Age remains the #1 risk factor for
Alzheimer’s type dementia, but time itself is
not causing cognitive decline…
• Since ageing is so closely related to frailty
maybe it’s actually frailty that influences
Alzheimer’s disease risk.
What is frailty?
How is it different from age?
• Generally, as you get older, you are more
likely to suffer from various health problems
• But.. we know that people of the same age
can be in very different states of health
What is frailty?
How is it different from age?
Frailty is a state of increased risk compared
with others of the same age.
It is multi-system physiologic vulnerability.
www.dal.ca/sites/gmr/our-tools
Comprehensive Geriatric
Assessment
So what does frailty have
to do with dementia?
Wallace et al., Lancet Neurology, 2019
Wallace et al., Lancet Neurology, 2019
Wallace et al., Lancet Neurology, 2019
Wallace et al., Lancet Neurology, 2019
Lots of people have a ‘mismatch’
between their level of neuropathology
and their cognitive status
The relationship between neuropathology
and clinical dementia is weakest among
people who are the most frail.
Frailty appears to account for some of
this difference
How do we know for sure
that frailty influences
dementia risk…
This relationship holds when we
broaden the definition of
neuropathology and dementia
Preventing severe frailty in people 85+
would avoid 12.6% of dementia cases
This relationship holds when we extend
it to a population-based dataset
Why is frailty useful?
Acts as a common language
Tracks change
Recognition of atypical
presentationsPredicts adverse
outcomes
Directs treatment &
management
Provides opportunity to
intervene
Group physical exercise effective, especially when combined with cognitive
training, and nutritional management.
How to prevent frailty
Apostolo et al., JBI Database Syst Rev Implement Rep, 2018
Physical activity interventions ALL TYPES & COMBINATIONS
were effective.
How to prevent frailty
Puts et al., Age Ageing, 2017
Exercise also effective for people with dementia
Acknowledgments
Dalhousie University (Canada)
Kenneth Rockwood
Melissa Andrew
Olga Theou
Sherri Fay
Judith Godin
Susan Kirkland
John Fisk
Sultan Darvesh
Rush University (USA)
David Bennett
Aron Buchman
University of Cambridge (UK)
Carol Brayne
Jane Fleming
Sally Hunter