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

susan.kirkland@dal.caCLSA 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

Questions?

Feel free to reach out!

@WallaceLindsay

Lindsay.Wallace@Dal.ca