Perception of well being predicts incident harm in cognitively impaired seniors who live alone: A...

1
screening and ENT exam, and without handicap-adapted communication hinting toward cognitive decline. After an ENT exam, extraction of cerumi- nal obstructions, an audiogram, the patients were re-tested using a handicap- adapted communication.329 (32%) of the patients had a relevant hearing impairment and a possible dementia with a positive screening, but showed an improvement in the testing results Of the remaining 572 patients another 79 patients (14%) had a relevant hearing impairment but a normal cognitive screening. The remaining 493 patients were tested negative for auditory im- pairment and remained positive for a cognitive decline in the second screen- ing. Conclusions: Undetected hearing impairment and the absence of handicap-adapted communication is significantly influencing the accuracy of the dementia testing, resulting in a significant percentage of false positive results. Therefore should a pre-test auditive testing become an imperative procedure in cognitive testing. O3-02-03 PERCEPTION OF WELL BEING PREDICTS INCIDENT HARM IN COGNITIVELY IMPAIRED SENIORS WHO LIVE ALONE: A PROSPECTIVE STUDY Mary Tierney 1 , Gary Naglie 2 , Rahim Moineddin 3 , Jocelyn Charles 4 , Jacques Lee 1 , Susan Jaglal 3 , Thulasi Thiruchselvam 1 , 1 Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Ontario, Canada; 2 Baycrest, Toronto, Ontario, Canada; 3 University of Toronto, Toronto, Ontario, Canada; 4 Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. Background: Our objectives were to identify whether perceptions of well being by older cognitively impaired people who live alone and by their care- givers accurately predict those who experience harm due to self-neglect and disorientation. Methods: This study included an inception cohort, >65 years of age, followed prospectively for one year. Participants were referred by primary care physicians (PCPs), community agencies, were patients of the emergency department or acute care medical units of a large teaching hospital. All lived alone and scored < 131 on the Dementia Rating Scale. Baseline measures included the MMSE; the Geriatric Depression Scale (GDS); the Social Resources subscale of the Older Americans Resources and Services; the SF-36 single item global health rating; and the Quality of Life Alzheimer’s Disease scale (QOL-AD). The latter was completed in- dependently by participants and caregivers. The Charlson Comorbidity In- dex (CCI) was calculated for each participant. At 3-month intervals over the prospective period, PCPs and caregivers provided information about harm experienced (outcome measure). Medical records were also obtained for any incident involving hospitalization or emergency services. An incident of harm was included if it a) occurred as the result of self-neglect or disori- entation, b) resulted in physical injury, property loss or damage, and c) re- quired emergency services. Three medical raters coded all outcome data, blind to baseline performance. Results: 221 participants were followed pro- spectively for one year. 22 experienced an outcome of significant harm: 15 had one incident, 6 had two and 1 had four. We started with a full Poison model with the 5 baseline well-being measures and covariates (age, educa- tion, sex, MMSE, and CCI). We then eliminated the non-significant predic- tors one by one. The final model included higher GDS depression scores, poorer self rating of health on the single item SF-36, and poorer quality of life as judged by caregivers on the QOL-AD. Conclusions: Participants’ and caregivers’ perceptions of the older person’s well being are important predictors of significant harm. The measures used in the present study are well known and simple to administer in the clinical setting and may be used to assist in the early identification of those at risk of harm. O3-02-04 USE OF INFORMANT-REPORTED WEB-BASED DATA COLLECTION TO ASSESS DEMENTIA SYMPTOMS: VALIDATION IN RELATION TO THE DEPENDENCE SCALE Kenneth Rockwood 1 , An Zeng 2 , Laura (Dong) Lin 2 , Arnold Mitnitski 1 , Christopher Leibman 3 , Lisa Mucha 4 , 1 Dalhousie University, Halifax, Nova Scotia, Canada; 2 DementiaGuide Inc., Halifax, Nova Scotia, Canada; 3 Janssen Alzheimer Immunotherapeutics, South San Francisco, California, United States; 4 Pfizer Inc., Collegeville, Pennsylvania, United States. Background: The world wide web offers unprecedented access to the expe- rience of people with dementia and their care partners. How best to make use of this access remains unclear. Given that the concept of progressive depen- dence offers a unifying understanding of disease progression, and can help bridge from clinical endpoints to estimates of treatment value for external decision makers, we undertook a construct validation study of web-based symptom profiles in relation to the 15 item Dependence Scale (DS). Methods: Data come from an online survey on www.dementiaguide.com. Care partners build individualized patient profiles from 70 symptoms de- tailed on the site’s SymptomGuideÔ (SGÔ). Care partners select symptoms to target for monitoring disease progression and treatment efficacy. Respon- dents were invited to also complete a questionnaire, which included the DS. For profilees diagnosed with Alzheimer’s disease (AD) DS scores and SGÔ scores were correlated. DS scores were also compared with SGÔ reports of dependence in Instrumental and basic Activities of Daily Living (I)ADLs, and behavioral symptoms and with a symptom-based staging algorithm. Re- sults: Of 250 profilees, most care partners (81%) were women, in middle age (range 51-60 years) living in the same home (46%) or visiting daily (10%). At the lowest levels of dependence (DS < 5) none of the profilees was in long term care; at the highest (DS > 12) almost all were. An AD di- agnosis was reported for 97 people (60% women; most aged between 81-85 years) most (65%) with DS scores between 5-10. The mean number of targeted IADL symptoms increased from 0 at DS < 2 to 8 at DS > 10. Psy- chiatric symptoms were present at DS > 5, and ADL symptoms at DS > 8. The correlation between the DS and the SG staging algorithm was 0.63. Conclusions: In an online survey, the DS showed good construct validity in relation to the need for institutional care, (I)ADL disability, behavioral symptoms, and a symptom-derived staging algorithm. That individualized patient descriptions accords with staging suggests that the web can be used to better understand the lived experience of dementia. The facility with which the web allows individualized data to be collected can also assist in a better understanding of treatment value. O3-02-05 USING TECHNOLOGY TO MAXIMIZE THE QUALITY OF LIFE OF PEOPLE WITH DEMENTIA IN ADULT DAY CENTERS, ASSISTED LIVING FACILITIES AND NURSING HOMES Perry Edelman 1 , Tony Ma 2 , 1 Mather LifeWays Institute on Aging, Evanston, Ill., United States; 2 Benten Technologies, Herndon, Va., United States. Background: Methods to reliably and validly assess the quality of life (QOL) of people with dementia are needed to: refute myths that people with dementia lose their identity or capacity for enjoyment; ensure that programs maximize the well-being of people with dementia; create the proper environment where people with dementia can thrive; and educate staff and family members. The well-being of people in residential care set- tings depends greatly on the people, programs, services, and physical en- vironment that not only support them, but capitalize on their remaining abilities. Thus, the difference between a life of the “three plagues” (Thomas, 1996) from which too many nursing home residents suffer - loneliness, helplessness, and boredom - and a life in which the number of occasions of fun and fulfillment are maximized, often depends on cre- ating opportunities for people to engage in enjoyable and productive ac- tivities. While good quality of care is a necessary component of good QOL, it is not synonymous with good QOL. Care that is of good technical quality can be blind to critical components of QOL such as engagement in meaningful and pleasurable activities. In U.S. nursing homes, information is routinely collected on quality of care indicators through the Minimum Data Set, but data are not routinely collected related to how people with dementia experience the daily activities that collectively constitute their well-being or QOL. A major reason is the lack of a reliable, valid, useful, Oral O3-02: Assessment and Intervention In Everyday Settings S499

Transcript of Perception of well being predicts incident harm in cognitively impaired seniors who live alone: A...

Page 1: Perception of well being predicts incident harm in cognitively impaired seniors who live alone: A prospective study

Oral O3-02: Assessment and Intervention In Everyday Settings S499

screening and ENT exam, and without handicap-adapted communication

hinting toward cognitive decline. After an ENTexam, extraction of cerumi-

nal obstructions, an audiogram, the patients were re-tested using a handicap-

adapted communication.329 (32%) of the patients had a relevant hearing

impairment and a possible dementia with a positive screening, but showed

an improvement in the testing results Of the remaining 572 patients another

79 patients (14%) had a relevant hearing impairment but a normal cognitive

screening. The remaining 493 patients were tested negative for auditory im-

pairment and remained positive for a cognitive decline in the second screen-

ing. Conclusions: Undetected hearing impairment and the absence of

handicap-adapted communication is significantly influencing the accuracy

of the dementia testing, resulting in a significant percentage of false positive

results. Therefore should a pre-test auditive testing become an imperative

procedure in cognitive testing.

O3-02-03 PERCEPTION OF WELL BEING PREDICTS

INCIDENT HARM IN COGNITIVELY IMPAIRED

SENIORS WHO LIVE ALONE: A PROSPECTIVE

STUDY

Mary Tierney1, Gary Naglie2, Rahim Moineddin3, Jocelyn Charles4,

Jacques Lee1, Susan Jaglal3, Thulasi Thiruchselvam1, 1Sunnybrook Health

Sciences Centre, University of Toronto, Toronto, Ontario, Canada;2Baycrest, Toronto, Ontario, Canada; 3University of Toronto, Toronto,

Ontario, Canada; 4Sunnybrook Health Sciences Centre, Toronto, Ontario,

Canada.

Background: Our objectives were to identify whether perceptions of well

being by older cognitively impaired peoplewho live alone and by their care-

givers accurately predict those who experience harm due to self-neglect and

disorientation. Methods: This study included an inception cohort, >65

years of age, followed prospectively for one year. Participants were referred

by primary care physicians (PCPs), community agencies, were patients of

the emergency department or acute care medical units of a large teaching

hospital. All lived alone and scored < 131 on the Dementia Rating Scale.

Baseline measures included the MMSE; the Geriatric Depression Scale

(GDS); the Social Resources subscale of the Older Americans Resources

and Services; the SF-36 single item global health rating; and the Quality

of Life Alzheimer’s Disease scale (QOL-AD). The latter was completed in-

dependently by participants and caregivers. The Charlson Comorbidity In-

dex (CCI) was calculated for each participant. At 3-month intervals over the

prospective period, PCPs and caregivers provided information about harm

experienced (outcome measure). Medical records were also obtained for

any incident involving hospitalization or emergency services. An incident

of harm was included if it a) occurred as the result of self-neglect or disori-

entation, b) resulted in physical injury, property loss or damage, and c) re-

quired emergency services. Three medical raters coded all outcome data,

blind to baseline performance.Results: 221 participants were followed pro-

spectively for one year. 22 experienced an outcome of significant harm: 15

had one incident, 6 had two and 1 had four. We started with a full Poison

model with the 5 baseline well-being measures and covariates (age, educa-

tion, sex, MMSE, and CCI). We then eliminated the non-significant predic-

tors one by one. The final model included higher GDS depression scores,

poorer self rating of health on the single item SF-36, and poorer quality

of life as judged by caregivers on the QOL-AD. Conclusions: Participants’

and caregivers’ perceptions of the older person’s well being are important

predictors of significant harm. The measures used in the present study are

well known and simple to administer in the clinical setting and may be

used to assist in the early identification of those at risk of harm.

O3-02-04 USE OF INFORMANT-REPORTEDWEB-BASED

DATA COLLECTION TO ASSESS DEMENTIA

SYMPTOMS: VALIDATION IN RELATION TO THE

DEPENDENCE SCALE

Kenneth Rockwood1, An Zeng2, Laura (Dong) Lin2, Arnold Mitnitski1,

Christopher Leibman3, Lisa Mucha4, 1Dalhousie University, Halifax, Nova

Scotia, Canada; 2DementiaGuide Inc., Halifax, Nova Scotia, Canada;

3Janssen Alzheimer Immunotherapeutics, South San Francisco, California,

United States; 4Pfizer Inc., Collegeville, Pennsylvania, United States.

Background: Theworld wide web offers unprecedented access to the expe-

rience of peoplewith dementia and their care partners. How best to make use

of this access remains unclear. Given that the concept of progressive depen-

dence offers a unifying understanding of disease progression, and can help

bridge from clinical endpoints to estimates of treatment value for external

decision makers, we undertook a construct validation study of web-based

symptom profiles in relation to the 15 item Dependence Scale (DS).

Methods: Data come from an online survey on www.dementiaguide.com.

Care partners build individualized patient profiles from 70 symptoms de-

tailed on the site’s SymptomGuide� (SG�). Care partners select symptoms

to target for monitoring disease progression and treatment efficacy. Respon-

dents were invited to also complete a questionnaire, which included the DS.

For profilees diagnosed with Alzheimer’s disease (AD) DS scores and SG�scores were correlated. DS scores were also compared with SG� reports of

dependence in Instrumental and basic Activities of Daily Living (I)ADLs,

and behavioral symptoms and with a symptom-based staging algorithm.Re-

sults: Of 250 profilees, most care partners (81%) were women, in middle

age (range 51-60 years) living in the same home (46%) or visiting daily

(10%). At the lowest levels of dependence (DS < 5) none of the profilees

was in long term care; at the highest (DS > 12) almost all were. An AD di-

agnosis was reported for 97 people (60% women; most aged between 81-85

years) most (65%) with DS scores between 5-10. The mean number of

targeted IADL symptoms increased from 0 at DS < 2 to 8 at DS> 10. Psy-

chiatric symptoms were present at DS > 5, and ADL symptoms at DS > 8.

The correlation between the DS and the SG staging algorithm was 0.63.

Conclusions: In an online survey, the DS showed good construct validity

in relation to the need for institutional care, (I)ADL disability, behavioral

symptoms, and a symptom-derived staging algorithm. That individualized

patient descriptions accords with staging suggests that the web can be

used to better understand the lived experience of dementia. The facility

with which the web allows individualized data to be collected can also assist

in a better understanding of treatment value.

O3-02-05 USING TECHNOLOGY TO MAXIMIZE THE

QUALITY OF LIFE OF PEOPLE WITH

DEMENTIA IN ADULT DAY CENTERS,

ASSISTED LIVING FACILITIES AND NURSING

HOMES

Perry Edelman1, Tony Ma2, 1Mather LifeWays Institute on Aging,

Evanston, Ill., United States; 2Benten Technologies, Herndon, Va., United

States.

Background: Methods to reliably and validly assess the quality of life

(QOL) of people with dementia are needed to: refute myths that people

with dementia lose their identity or capacity for enjoyment; ensure that

programs maximize the well-being of people with dementia; create the

proper environment where people with dementia can thrive; and educate

staff and family members. The well-being of people in residential care set-

tings depends greatly on the people, programs, services, and physical en-

vironment that not only support them, but capitalize on their remaining

abilities. Thus, the difference between a life of the “three plagues”

(Thomas, 1996) from which too many nursing home residents suffer -

loneliness, helplessness, and boredom - and a life in which the number

of occasions of fun and fulfillment are maximized, often depends on cre-

ating opportunities for people to engage in enjoyable and productive ac-

tivities. While good quality of care is a necessary component of good

QOL, it is not synonymous with good QOL. Care that is of good technical

quality can be blind to critical components of QOL such as engagement in

meaningful and pleasurable activities. In U.S. nursing homes, information

is routinely collected on quality of care indicators through the Minimum

Data Set, but data are not routinely collected related to how people with

dementia experience the daily activities that collectively constitute their

well-being or QOL. A major reason is the lack of a reliable, valid, useful,