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Health inequalities and dementia Tom Russ Alzheimer Scotland Dementia Research Centre & Division of Psychiatry University of Edinburgh [email protected] 28 th January 2015

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Health inequalities and dementia

Tom Russ

Alzheimer Scotland Dementia Research Centre & Division of PsychiatryUniversity of Edinburgh

[email protected]

28th January 2015

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Dementia

Dementia describes a syndrome of cognitive & functional decline

Often accompanied by behavioural and psychological symptoms

The commonest cause is Alzheimer disease (50-75%)

Approximately one in 20 older adults is a↵ected

Growing numbers; falling prevalence??

850,000 people in the UK; 36 million worldwide

If dementia were a country it would have a G20 seat

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 3 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Public health importance

Financial cost greater than cardiovascular disease and cancer

Personal cost to those a↵ected unmeasurable

Approximately half of people are not diagnosed

Post-diagnostic support now guaranteed in Scotland

Early treatment can a↵ect outcome, including preservingfunction and keeping people at home for as long as possible

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 4 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Mysterious dementia

Alois Alzheimer described the first case in 1906

There has been over two decades of intensive research. . .

. . . and there are still no disease-modifying treatments

There is an urgent need to understand dementia aetiology

Delaying or preventing onset would have substantial e↵ects

Two health inequalities: unscheduled admissions and geography

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 5 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Dementia in the general hospital

People with dementia are often admitted to hospital

6% of people with dementia are in hospital now(vs 0.6% of the general older population)

25% of general hospital inpatients have cognitive impairment

Only half will have been given a diagnosis

People with dementia are vulnerable in hospital

Unscheduled admissions should be avoided, where possible

But. . . what factors put someone at risk of admission?

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 6 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Scottish Dementia Research Interest Register

People from across Scotland

Diagnosed with dementia (and carers)

Who have expressed an interest in research

Demographic, cognitive, functional, and behavioural measures

Consent to linkage to electronic health records

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 7 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Electronic health records

Scottish Morbidity Records 01 and 04

All general and psychiatric hospital admissions in Scotland

Community Health Index (chi) number is a unique identifier:

28 01 15 1234Allows linkage of all health data pertaining to this individual

e.g. identifying who has been admitted to hospital and when

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 8 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Data recorded

Addenbrookes Clinical Examination — Revised

Instrumental Activities of Daily Living scale

Personal Self-Maintenance scales

Neuropsychiatric Inventory including Carer Distress

Clinical Dementia Rating scale

Details of illnesses and prescribed medications

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 9 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Survival analysis

www.unc.edu

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 10 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Survival analysis

www.unc.edu

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 11 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

SDRIR sample

N = 730

47.8% female

Mean (SD) age 76.3 (8.2)

Range 50 to 94 years

Mean follow up 1.2 years

Range 2 days to 3.3 years

37.5% admitted

Various reasons

Dementia recorded 53.3%

Russ TC et al. (2015) Prediction of general hospital admission in people with dementia: cohort study. Brit J Psychiatry

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 12 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Predictors of admission

Male (HR; 95% CI: 1.32, 1.04–1.68)

Non-AD, non-vascular dementia (1.67, 1.09–2.56)

Comorbidity (1.28, 1.00–1.65)

Physical Self-Maintenance scale (1.18, 1.04–1.33)

Neuropsychiatric Inventory (1.22, 1.09–1.37)

NPI carer distress (1.14, 1.02–1.28)

Russ TC et al. (2015) Prediction of general hospital admission in people with dementia: cohort study. Brit J Psychiatry

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 13 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Neuropsychiatric symptoms predict admission

NPI score was the onlyindependent predictor

One standard deviationincrease in score increasedrisk of admission by 21%

Risk highest in highest levelsof distress

Agitation may be the mostimportant symptom

Time (days)10957303650

Cum

ulat

ive

Surv

ival

1.0

0.8

0.6

0.4

0.2

0.0

>141-140

NPI score

Page 1

Russ TC et al. (2015) Prediction of general hospital admission in people with dementia: cohort study. Brit J Psychiatry

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 14 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Interim conclusions

Dementia is common and important

Many people with dementia are admitted to hospital

Neuropsychiatric symptoms might increase risk of admission

Can we reduce these symptoms and thus risk of admission?

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 15 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Geographical variation in disease

The “Scottish” e↵ect

Cardiovascular disease

Leukaemia

Multiple sclerosis

Schizophrenia

Dementia?

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 16 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Geographical variation in dementia

‘Quantitative integrations of the literature’I e.g. eurodem, eurocode

Methodological di�culties in comparing studiesI diagnostic criteriaI methodologyI population studied

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 17 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Geographical variation in dementia

Evidence at most scales of geographical variation in dementia

Wide variation in quality of studies

Rural living is associated with an increased risk of AD

Small area research (most informative) is most scarce

Geographical variation may help identify risk/protective factors

Russ TC et al. (2012) Geographical variation in dementia: systematic review and meta-analysis. Int J Epidemiol 41: 1012-32.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 19 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Association between rurality and dementia

Prevalence:OR 1.11, 90% CI 0.79-1.57

Incidence: 1.20, 0.84-1.71

Stronger for AD, particularlyearly life exposure:

I prevalence 2.22, 1.19-4.16I incidence 1.64, 1.08-2.50

Definition of rurality

Study

Ogunniyi et al (2000)Ogunniyi et al (2000)Lin et al (1998)Zhang et al (2006)Jean et al (1996)

Overall

OR (90% CI)

1.57 (0.44−5.56)2.49 (1.21−5.12)1.17 (0.74−1.85)1.50 (1.29−1.75)1.52 (1.21−1.90)

1.64 (1.08−2.50)

0 1 2 3

Odds ratio

Russ TC et al. (2012) Geographical variation in dementia: systematic review and meta-analysis. Int J Epidemiol 41: 1012-32.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 20 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Media coverage

“People who grow up in countryside ‘twice as likely to developAlzheimer’s”

“Being raised in the countryside ‘doubles Alzheimer’s risk’ butresearchers have no idea why”

“Alzheimer’s: ‘Growing up in rural area doubles risk”’

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 21 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Media coverage

“People who grew up in rural areas ‘at twice the risk of Alzheimer’s’. . .Alzheimer’s experts have urged caution about the findings

and say there is no compelling reason to flee the countryside

for urban life”!

WebMD UK Health News“Health information you can trust”

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 22 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Small area studies of dementia

Frecker (1991) J Epidemiol Commun H. Whalley et al. (1995) Brit J Psych.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 23 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Questions

Does the prevalence and incidence of dementia vary by place?

Is such variation real or artifactual?

What factors might be associated with this variation?

Are any of them potentially modifiable?

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 24 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Swedish Twin Registry

Established in 1961

Comprehensive twin register

1886 births onwards

Questionnaire data collected

All dementia cases identified

Gatz, M. et al. (2005) Neurobiol Aging 26: 439–47.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 26 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

1932 Scottish Mental Survey

Intelligence test of all11-year-old children (87,498)

Repeated in 1947

Unique in the world

Moray House Test

Findings published in 1933

S.C.R.E. (1933) The intelligence of Scottish children: a national survey of an age-group. London: University of London Press.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 27 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

1932 Scottish Mental Survey: follow up

Ledgers discovered by accident

Local follow-up since 1997I

www.lothianbirthcohort.ed.ac.uk

Iwww.disconnectedmind.ed.ac.uk

Iwww.abdn.ac.uk/aberdeen-birth-cohort

They form a narrow age cohort

Record linkage of entire cohort by the Information and StatisticsDivision of NHS National Services Scotland (linkage rate 44%)

Hospital discharge data

Mortality data

Greater Glasgow & Clyde Nursing Homes Medical PracticeDeary, Whalley & Starr (2009) A lifetime of intelligence. Washington: American Psychological Association.Deary, Gow, Pattie & Starr (2012) Cohort Profile: The Lothian Birth Cohorts of 1921 and 1936. Int J Epi 41: 1576–84.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 28 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Bayesian disease mapping

Many statistical methods assume independence of observations

Tobler’s first law of geography: close things are more similarthan things which are further apart

Smooths out random variation in disease prevalence/incidence

Very computer intensive – longest model ran for 10 days!

Result is relative e↵ect for each small area

Tobler (1970) Econ Geogr 46: 234–40.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 29 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

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Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 30 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Swedish study

Male and female Swedish twins analysed separately

Total sample size 27,680 (50% female; 25% monozygotic)

Mean (sd; range) age:I Men: 78.2 years (8.2; 41–103)I Women: 80.2 years (8.1; 28–110)

993 dementia cases

Located by 5-digit zipcode of adult residence(mapped by 3-digit zipcode; N = 568)

Russ et al. (2015) Geographical variation in dementia examining the role of environmental factors in Sweden & Scotland. Epidemiology.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 32 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Swedish twins — genetic e↵ects removed

Russ et al. (2015) Geographical variation in dementia examining the role of environmental factors in Sweden & Scotland. Epidemiology.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 33 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Scottish study

Male and female participants analysed separately

Total sample size 37,597 (48.7% female; all born in 1921)

3605 dementia cases

Located at age 11 by county of school attended (N=38)

Located in adulthood by postcode sector (N = 953)

7854 missing adult location

Russ et al. (2015) Geographical variation in dementia examining the role of environmental factors in Sweden & Scotland. Epidemiology.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 35 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Scotland: childhood location

Russ et al. (2015) Geographical variation in dementia examining the role of environmental factors in Sweden & Scotland. Epidemiology.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 36 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Scotland: adult location

Russ et al. (2015) Geographical variation in dementia examining the role of environmental factors in Sweden & Scotland. Epidemiology.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 37 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Hypotheses redux

Both studies support geographical variation of dementia rates

This was not completely explained by genetic/familial factors

Something(s) acting in adolescence or later?

We can speculate whether there is an e↵ect of latitude

Russ et al. (2015) Geographical variation in dementia examining the role of environmental factors in Sweden & Scotland. Epidemiology.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 38 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Some speculations on mechanisms

Both studies seem to point to a north-south e↵ect so might there bea risk or protective factor related to latitude?

Selenium may have a role in dementia (Loef et al., 2011) andconcentrations vary with latitude in Sweden (low in the north)

Lower vitamin D levels have been linked to poorer cognition andincreased risk of AD (Balion et al., 2012; Littlejohns et al., 2014)

Previous work suggested the importance of proximity to mining;the majority of mines in Sweden are in the north of the country.

Balion (2012) Neurology 79: 1397–405; Littlejohns (2014) Neurology 83: 920–8; Loef (2011) J Alzheimers Dis 26: 81–104.

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 39 / 42

Dementia Unscheduled admissions Geographical clustering Disease mapping Sweden & Scotland Discussion

Concluding remarks

Dementia is a major and growing public health concern

Neuropsychiatric symptoms relate to risk of hospital admission

Dementia rates do seem to vary with geographical location

Should resources be redirected to areas with increased need?

If environmental factor(s) are responsible, what are they?

Can we optimise them in everyone and halve dementia rates?

Tom Russ (University of Edinburgh) Twitter: @AlzScotDRC 28th January 2015 41 / 42

Acknowledgements

Margaret Gatz, Nancy L. Pedersen, Jean Hannah, Grant Wyper,G. David Batty, Ian J. Deary & John M. Starr

TR was supported by Alzheimer Scotland and the Scottish Dementia ClinicalResearch Network during the course of this work. He is now employed by the

University of Edinburgh and NHS Lothian. He is a member of both theAlzheimer Scotland Dementia Research Centre funded by Alzheimer Scotlandand the University of Edinburgh Centre for Cognitive Ageing and Cognitive

Epidemiology, part of the cross council Lifelong Health and WellbeingInitiative (G0700704/84698). Funding from the BBSRC, EPSRC, ESRC and

MRC is gratefully acknowledged.

[email protected]

www.alzscotdrc.ed.ac.uk

@AlzScotDRC