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An Update On Global Research Initiatives On The Protection Of Free-ambulating Persons With Dementia Professor Elizabeth Beattie Queensland University of Technology School of Nursing

An Update On Global Research Initiatives On The Protection Of Free

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Page 1: An Update On Global Research Initiatives On The Protection Of Free

An Update On Global Research Initiatives On The Protection Of Free-ambulating Persons

With Dementia

Professor Elizabeth Beattie

Queensland University of Technology

School of Nursing

Page 3: An Update On Global Research Initiatives On The Protection Of Free

Issues

• Proliferation of the use of GPS locator technologies with limited data-based evidence of efficacy or effectiveness.

• Application of technology in the absence of prescribing guidelines.

• “Single factor” solution vs multfactorial response to immediate and cumulative outcomes.

• Limited public discourse re ethical issues: freedom/indep.vs deteriorating function/risk

• ‘Messy’ definitions of behaviour.

• Focus of carer outcomes vs PWD outcomes UNTIL event occurs and safe return is achieved.

• Poor translation impact - marginal uptake of data-based research findings, assessment strategies and potentially useful non-pharmacological approaches.

Page 4: An Update On Global Research Initiatives On The Protection Of Free

Ethics, attitudinal and conceptual

studies

(7)

Combination (Environmental manipulation +

technology) studies (4)

Efficacy studies of GPS location

and retrieval devices

(1)

The Scope of the Science in Progress

Conceptual and methodological

studies (3)

Page 5: An Update On Global Research Initiatives On The Protection Of Free

Conceptual, etiological and methodological studies (3)

• Natural history of the emergence of wandering behaviour

Joseph. I and the IWC. Early Trajectory of Wandering in Veterans with Mild Dementiahttp://www.hsrd.research.va.gov/research/abstracts.cfm?Project_ID=2141698644

• A data-based typology

Algase, Antonakos, Beattie, Beel-Bates & Yao (2009) Empirical derivation and validation of a wandering typology. JAGS. 57(11):2037-45.

• Moore, Algase, Powell-Cope, Applegarth, and Beattie. (2009) A framework for managing wandering and preventing elopement. American Journal of Alzheimer's Disease and Other Dementias, 24(3). pp. 208-219.

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The Data Aim of this Analysis

PARENT STUDY TESTING THE NDB MODEL in NH (22) & ALF (6)

- ambulatory individuals > 65 years with dementia (N=181)- English as first language- <24 on MMSE- 30 days medication stability

12 20-min. videotaped observation periods once/hr 0800-2000.

random assignment to: 1) first or second half of the hour; 2) over 2 days, separated by a 2-day hiatus.

coded using Noldus Observer 5.0 softwareWandering patterns (Pacing, Lapping, Random).

Staff ratings of wandering status on a 4-point ordinal scale

To develop and validate a typology of wandering at the person rather than the episode level

Using new set of parameters for Wandering assessment based on an individual’s variation in

rate and duration of wandering episodes over a series of

daytime observations

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Secondary Analysis for Empirical Derivation and

Validation of a Wandering Typology (JAGS, forthcoming)

Sample characteristics

Subjects from parent project with 10/12 complete

scheduled observations

N= 142 (78.5% of parent sample)

76% female (n=108)

Mean age = 83.7years (SD=6.4, range = 68-102)

Mean MMSE score (n=96) = 10.52 ( SD =6.2, range=0-

23/30)

66.2% (94) subjects independently ambulatory; 46

required a cane or walker.

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The Independent Variables

NDB Background

Factor

Operational definition Obtained from/by/using

Dementia-compromised

function

Cognitive impairment MMSE

Circadian Rhythm Tympanic temperature

readings

Temp Genius readings

every 3 hrs for 36 hrs

Demographic factors Age and gender RA Chart review

Health status Mobility MDS mobility items [RA

chart review]

Health status General health Cumulative Illness Rating

Scale-Geriatrics (CIRS-

G) [GNP]

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Tools developed to measure other important variables

The Crowding Index – density and proximity of others to the person of interest. Observer report.

The Behavioural Response to Stress Scale – premorbid stress response behaviours. Informant retrospective report.

The Wayfinding Efficiency Scale – Current capacity to wayfind in the home or RAC. PWD and informant current report.

The Environmental Ambiance Scale – emotional tone of the physical and social environment. Evaluation by staff and family carers.

All with strong psychometrics and all either published or accepted for publication in

the next 12 months.

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The Dependent Variables WANDERING21 previously derived wandering parameters (N=44 known wanderers with a complete set of 12 observations)1. Parameter examples: mean hourly rate, mean hourly duration. % of hours with any wandering, peak wandering rate, maximum hourly duration.

Principal components analysis (PCA): Low/Moderate wandering outputHigh wandering durationsHigh wandering ratesTime of day

Ratings by nursing staff on a 4-point ordinal scale: “definitely not a wanderer” –“yes, a distinct wanderer”

1Algase DL, Antonakos C, Beattie ERA et al.(2009) New parameters for daytime wandering. Research in GerontologicalNursing, 2;58-68.

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Analysis

Cluster analysis using the PCA components scores as

variables.

ANOVA and Chi-square test of association to compare

clusters and validate the 3-cluster solution.

Association of staff ratings of wandering status with

wandering clusters and non-wanders using Chi-square.

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Three distinct clusters of wanderers [A,B,C] who differed significantly from non-wanderers overall.

Cluster A (n=14, 9.86%) CLASSIC WANDERERS

Cluster B (n=55, 38.72%) MODERATE WANDERERS

Cluster C (n=54, 38.03%) SUBCLINICAL WANDERERS

19 unassigned subjects NON-WANDERERS (13.39%)

Types not differentiated by circadian rhythm, age or gender

Results

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CLASSIC (9.86%):

Most wandering by rate and duration;

Wandered during greatest percent of observations as well as within periods;

Peak period slightly earlier in the day (3pm);

Most severe cognitive impairment;

Greatest independence in mobility;

Poorest overall general health;

More severe heart problems;

Poorer GI and nutritional status;

More likely to be identified as wanderers by staff.

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MODERATE (38.72%)

Appreciably lower rates and durations of wandering than classic wanderers;

Wandered in about 50% of observations and less within observation periods than classic wanderers;

Less cognitive impairment than classics (but more than cluster C);

Poorer mobility independence (similar to cluster C);

The most robust overall and system-level health status. Compared to Non-Ws, sig, better upper and lower GI health, better health overall;

Highly likely to be identified as wanderers by nursing staff.

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SUBCLINICAL (38.03%)

Very low levels of wandering sporadically throughout the

day at levels that may be too low to be noticed or to

warrant classification;

More than 50% misclassified as non-wanderers by

nursing staff;

Least cognitive impairment among wanderers;

Similar level of mobility independence as moderate

wanderers;

Slightly fewer heart and GI problems than classic

wanderers.

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OUTCOMES

Empirically-derived typology based on variation in wandering rate

and duration over the course of daytime hours extends descriptive

information beyond basic geographic patterns;

A means to better characterise wanderers- ? Possible phenotype of

wandering/ capacity to examine potential aetiological factors;

Some NDB Background factors were useful in demonstrating cluster-

level differences among types of wanderers and between Ws and

Non-Ws.

Overall factors e.g. degree of CI, general and specific health

problems, may be the best indicators because overlap across

clusters was least for these parameters.

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Several potential

intervention directions

Examination of specific cardiac, GI and nutritional problems, gait and

balance and cognitive deficits such as attention and wayfinding are

necessary.

When the amount of wandering is high optimizing cardiac

functioning may reduce wandering, and through possible effects on

brain perfusion and cognition, may improve functioning in other

areas.

NOT BENIGN. Consistent with an early study of wandering as a form

of cardiac decompensation;

For S-C wanderers, low levels of motor output may be improved by

relief of pain and discomfort and improved nutrition;

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Efficacy and Effectiveness studies of GPS location and retrieval devices

1. One robust mixed methods study in progress (proposed N=600)

Strong cognitive battery, multiple outcome measures for both PWD and carer.

Reported study protocol in Shovel et al (2008) The Use of Advanced Tracking Technologies for Analysis of Mobility in Alzheimer's Disease and Related Cognitive Disorders

http://www.biomedcentral.com/1471-2318/8/7

Five-year, $1.9 million grant from the German-Israeli Project Cooperation (DIP) program committee, funded by the German Federal Ministry for Education and Research and the German Aerospace Centre.

Now in final phases of data collection, analysis and external evaluation.

2. Three other studies (UK, Belgium, Australia) focused primarily on carer burden and QOL

Safe2Walk http://www.safe2walk.com.au/

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Combination (Environmental manipulation + technology) studies efficacy studies (2)

• Moore ( 2009 - ) Home Evaluation of Exit Barriers in Wandering (HEEBW)

http://clinicaltrials.gov/ct2/show/NCT00997425

Visual barriers + RFID

• Kearns (2009 -) Evaluation of RFID in ALF

• Beattie, Moore, Kearns, Algase et al (2010 -)

Dyad-determined perimeter comfort zones and caregiver vigilance

Pre and post repeated measures quasi experiment

• Beattie et al (2009- )

Pre-admission risk evaluation and tailored monitoring.

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January 2010: Man dies in Ocean

Police say a 69-year-old Belfast man pulled from the ocean after wandering away from his home was pronounced dead at a local hospital.

Police say John "Butch" Caswell suffered from dementia. He was reported missing by his wife just before 7 a.m. Sunday.Law enforcement agencies and member's of Caswell's church searched for him throughout the morning until a boy spotted him floating in Belfast Bay about 12:45 p.m.

(Boston Globe, 2010)

June, 2010

A further 27 reports since January, from 12 countries, including one Australian fatality.

Missing woman found in FremantleA 73-year-old woman with dementia was found in Fremantle just before 9pm tonight after she went missing from her Subiaco nursing home before noon.She was discovered in Coles in Fremantle by a staff member after a day of extensive searching from police and FESA in Subiaco and Kings Park.WA Police also issued a StateAlert for a missing person for the first time since the emergency automated messaging system was launched in December 2009.Police said they took the step because they had grave concerns for the woman's safety

IN THE NEWS