Collaborative Research Grant Initiative: Mental Wellness ... · The administration and management...

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Collaborative Research Grant Initiative: Mental Wellness in Seniors and Persons with Disabilities Operating Grant Final Report November 2014 Maxwell, Colleen J. Enhancing System Capacity to Improve the Quality and Continuity of Mental Health Care for Seniors in Assisted Living and Long Term Care

Transcript of Collaborative Research Grant Initiative: Mental Wellness ... · The administration and management...

Page 1: Collaborative Research Grant Initiative: Mental Wellness ... · The administration and management of medications requires ongoing review and oversight, particularly in DAL settings.

Collaborative Research Grant Initiative:

Mental Wellness in Seniors and Persons

with Disabilities

Operating Grant Final Report

November 2014 – Maxwell, Colleen J.

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Alberta Addiction & Mental Health Research Partnership Program 2

PLAIN LANGUAGE SUMMARY The Mental Health Sub-Study of the Alberta Continuing Care Epidemiological Studies (ACCES) was a

province-wide research program involving 1,335 older adults with dementia and depression in designated

(publicly-subsidized) assisted living facilities (DAL) and in long-term care facilities (LTC) between 2006

and 2009. Information on their family caregivers and the facilities in which they lived was also captured.

The main objectives were:

(i) to examine the health, social needs and quality of care of older adults with Alzheimer’s disease and

related dementias (ADRD) and/or depression living in DAL and LTC facilities in Alberta;

(ii) to identify the mix of services provided to these residents, including assistance from family

caregivers; and,

(iii) to examine health outcomes across settings (including admission to hospital and long-term care),

taking resident and facility characteristics into account.

This large-scale longitudinal study relied on numerous data sources including: comprehensive

assessments conducted with 627 residents with dementia in 59 DAL facilities and 708 residents with

dementia in 54 LTC facilities across Alberta; interviews with 582 DAL family caregivers and 650 LTC

family caregivers; facility surveys with an administrator, manager, or director of care who was familiar with

the facility and had direct knowledge about residents; and, linkage with provincial health service utilization

data to capture admission to hospital and emergency department visits.

In both DAL and LTC, the average age of residents with dementia was about 86 years (with over 50%

aged 85+). Residents in DAL were more likely to be female (78% v. 67% in LTC) and widowed (73% v.

62% in LTC). The average number of diseases per resident was 4.8 in DAL (with 35% having 6+

conditions) and 5.4 in LTC (with 44% having 6+). The most common co-existing conditions among

residents with dementia in both settings were hypertension, arthritis and depression (35% of DAL and

42% of LTC residents had a diagnosis of depression). The average number of regularly prescribed

medications per resident was similar in DAL (7.7) and LTC (7.4). About 53% of DAL and 61% of LTC

residents showed some level of instability in terms of clinical complexity and health. DAL residents were

generally less impaired (in cognitive, physical & bladder/bowel functioning) than LTC residents. Lack of

social engagement/activity was a concern for 21% of DAL and 38% of LTC residents with dementia.

Additionally, 50% of DAL and 64% of LTC residents showed little to no time involved in activities (when

awake and not receiving treatment or care). Family caregivers also noted a particular need for greater

opportunities for social and recreational activities within facilities.

During the 1-year follow-up, 25% of DAL residents were admitted to a LTC facility (28 subsequently died

within the year) and 79 (12.6%) died without LTC admission. Residents with poor social relationships,

poorer functional and health status, a recent hospitalization, and from smaller sized facilities were more

likely to be admitted to LTC. Although LTC residents with dementia showed poorer health and functional

status compared with DAL residents, the rate of hospitalization during follow-up was 3 times higher for

DAL residents with dementia. The likelihood of being admitted to hospital was higher for DAL residents

who were older (aged 90+) and who had poor social relationships, high levels of fatigue, medication use

(especially 11+ drugs) and previous hospital use (2+ visits in past year). DAL residents from facilities that

Collaborative Research Grant Initiative: Mental Wellness in Seniors and Persons with Disabilities

Final Report – Enhancing System Capacity to Improve the Quality and Continuity of

Mental Health Care

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Alberta Addiction & Mental Health Research Partnership Program 3

were smaller in size, not affiliated with a chain (of AL/LTC sites), and that had lower professional nursing

staffing levels - were more likely to be admitted to hospital.

For DAL residents with dementia, the likelihood of being admitted to LTC or hospital within a year

represents important outcomes given the philosophy of assisted living (to promote aging in place) and in

terms of better understanding the impact on the entire health care system of the shift to AL (from LTC) as

a possible housing option for vulnerable seniors (including those with dementia and mental health

conditions). The findings from the research raise some concerns about the full complement of services

and staffing required within assisted living to ensure optimal quality of care and positive health outcomes

for residents with dementia and their family caregivers. DAL and LTC family caregivers were generally

positive in their assessment of staff but were concerned with staff shortages and turnovers. Family

caregivers of DAL residents also urged for greater clarity regarding admission and retention criteria.

Meeting the complex needs of residents with dementia and mental health needs represents a major

challenge in both settings. Of concern is the ability to deal with existing health issues, to detect and

manage emerging health issues and to facilitate transition to other care settings, if needed. Determining

the optimal mix and integration of mental health services and policies for appropriate placement is critical.

The administration and management of medications requires ongoing review and oversight, particularly in

DAL settings. Enhancing social engagement is also a key area for improvement in DAL and LTC settings.

Given staffing levels/mix in DAL and the general lack of recreation aides/specialists, innovative

approaches to providing opportunities for social activities are required.

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Alberta Addiction & Mental Health Research Partnership Program 4

EXECUTIVE SUMMARY Our study represents the first in Canada to examine the health characteristics and outcomes of older

residents with Alzheimer’s disease and related dementias (ADRD) and mental health conditions

(including depression) receiving care in a diverse range of designated assisted living (DAL) and LTC

facilities. The expansion and variability of assisted living across Canada coupled with the heterogeneity in

the functional, psychosocial and health needs of residents with ADRD and mental health conditions in this

setting makes it an important area for research. Our findings show that not only are mental health

conditions (including ADRD and depression) prevalent among older residents in (designated) assisted

living (DAL) facilities in Alberta – their health and social needs are significant. While often viewed as an

alternative to traditional LTC care, one quarter of DAL residents with ADRD in Alberta required LTC

admission over one year. In addition, residents with ADRD residing in DAL showed a cumulative

incidence of hospitalization approximately 3 times higher than that observed for LTC residents with

ADRD.

Our findings regarding resident- and facility-level predictors of long-term care placement and admission to

hospital among DAL residents with ADRD highlight various clinical and policy areas where targeted

interventions may prevent (or delay) institutionalization and hospitalization among this vulnerable older

population. Our findings also provide compelling evidence of the importance of policy and organizational

characteristics specific to the assisted living sector which have important implications for the wider health

care system (including long-term care and acute care service use and costs).

RESEARCH OVERVIEW Objective(s) The framework for our research program addressed the domain of “system capability to respond to

those with complex needs” and included the following specific objectives:

1. Describe and compare the clinical, functional and social care needs of seniors with Alzheimer’s

disease and related dementias (ADRD) and/or depression across assisted living (AL) and long-

term care (LTC) settings;

2. Describe and compare patterns of family engagement, caregiver health and well-being (and their

associations with resident & facility characteristics) across AL and LTC settings;

3. Examine the effects of the care setting, and factors within the setting (staff ratios/mix, family and

mental health professional involvement, specialized care units) on resident outcomes related to

health, functioning, care transitions and health care utilization (adjusting for case-mix);

4. Work with policy-makers and providers to refine research priorities and to disseminate findings to

promote the development of continuing care policy/practice and quality improvement initiatives for

enhanced care of residents with ADRD and/or depression.

Background The increasing prevalence and complexity of mental health disorders experienced by aging

populations present significant challenges to care providers, family members and decision-makers

concerned with ensuring the quality of care and quality of life of such vulnerable older adults

(Beekman et al., 2002; Canadian Coalition for Seniors; Mental Health [CCSMH], 2006a; Canadian

Coalition for Seniors; Mental Health [CCSMH], 2006b; Feil, MacLean, & Sultzer, 2007; Nakajima &

Wegner, 2007; Sloane et al., 2002a). For particularly common and debilitating disorders such as

Alzheimer’s disease and related dementias (ADRD) and depression,(Beekman et al., 2002; Sloane et

al., 2002a) there are pressing concerns and unanswered questions about the optimal mix and

integration of care services and policies to facilitate the appropriate placement and management of

affected seniors across the care continuum (including supportive/assisted living, referred to here as

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Alberta Addiction & Mental Health Research Partnership Program 5

ALa and long term care [LTC]

b) (Ruckdeschel & Katz, 2004; Zimmerman, Sloane, Heck, Maslow, &

Schulz, 2005a; Zimmerman et al., 2013). This includes uncertainties about how best to structure and

implement integrated packages of community-based care (Alexopoulos & Bruce, 2009; Bellantonio et

al., 2008; US Department of Health & Human Services [DHHS], 2004) to support aging-in-place while

avoiding the more costly and sometimes inappropriate use of acute-care (Carter & Porell, 2005;

Walker, Teare, Hogan, Lewis & Maxwell, 2009) and lengthy wait times for LTC.

In response to escalating health care costs and seniors’ preferences to receive care in a home-like

setting, Alberta adopted a new vision for continuing care that called for a significant expansion of the

AL stream (Alberta Health & Wellness [AHW], 2007b; Alberta Health & Wellness [AHW], 2008b;

Alberta Seniors and Community Supports [ASCS], 2009). Assisted living facilities provide an array of

services in a variety of non-medical settings and aim to provide a combination of housing, personal

support and health care while promoting autonomy, privacy and independence. As in the U.S.

(Assisted Living Workgroup [ALW], 2003; Golant, 2004; Hawes, Phillips, & Rose, 2008; U.S. General

Accounting Office [USGAO], 1999), AL is becoming an increasingly important residential care setting

for frail older adults (including many with ADRD and/or depression) within Canada (Canadian Centre

for Elder Law [CCEL], 2005). At the outset of our Alberta Continuing Care Epidemiological Studies

(ACCES) program in 2007-08, there were approximately 18,500 persons in Alberta living in

supportive living settings (including designated assisted living [DAL]) as compared with 14,500 in LTC

(AHW, 2007b; AHW 2008b; ASCA, 2009). Early data emerging from the ACCES Program illustrated

that an estimated 58% of DAL and 71% of LTC residents in Alberta had a diagnosis of ADRD.c The

corresponding prevalence estimates for depressive disorders in these two care settings were 34%

and 44%, respectively.c Similarly, US research has shown that not only are ADRD and depressive

symptoms common among AL (and LTC) residents, they often co-exist either together or with other

conditions (e.g., behavioural symptoms and pain) leading to greater risks for poor outcomes and

caregiver distress (Boustani et al., 2005; Gruber-Baldini, Boustani, Sloane, & Zimmerman, 2004;

Gruber-Baldini et al., 2004; Gruber-Baldini, et al., 2005; Rosenblatt et al., 2004; Watson, Garrett,

Sloane, Gruber-Baldini, & Zimmerman, 2003; Watson et al., 2006; Williams, Zimmerman, Sloane, &

Reed, 2005).

Despite the rapid proliferation of AL, empirical data on the health and service needs, quality of care,

and outcomes of residents with ADRD and/or depression are lacking. This is particularly true in terms

of how AL facilities compare in such areas to traditional LTC (Hawes & Phillips, 2007; Sloane et al.,

2005; Zimmerman et al., 2003; Zimmerman et al., 2005a; Zimmerman et al., 2005b). While the AL

model may promote functional independence, satisfaction and better (or equivalent) outcomes among

some residents (Frytak, R. A. Kane, Finch, R. L. Kane, & Maude-Griffin, 2001; Mitchell & Kemp,

2000; Pruchno & Rose, 2000; Sloane et al., 2005), several questions remain unanswered (ALW,

2003; Golant, 2004; USGAO, 1999). This includes the potential negative impact of lower staffing

requirements in AL on the quality and transitions of care for seniors with mental illnesses and

comorbid conditions that further compromise their treatment and long term stability (Philips et al,

2003). Reports of higher hospitalization rates for residents with dementia in U.S. AL settings

compared with nursing homes suggest that AL facilities may face difficulties in caring for cognitively

impaired residents with substantial and/or unstable medical/nursing needs (Sloane et al., 2005;

Stearns, 2007). The potential for increased risks of inappropriate (and sub-optimal) medication use

and adverse medication events among AL residents has also been raised in light of the use of non-

a In Alberta (at start of study) this included AL level 3 and enhanced AL level 4 of the supportive housing stream –

Appendix 2. b Refers to more traditional nursing homes or continuing care centres – see Appendix 2.

c ACCES baseline data 2006-08, diagnostic data abstracted from medical records during resident assessments

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registered nursing staff to administer medications and the relatively lower levels of oversight provided

by physicians and pharmacists in this setting (ALW, 2003; Lakey, Gray, Sales, Sullivan, & Hedrick et

al., 2006; Lyketsos et al., 2007; Sloane, Zimmerman, Brown, Ives, & Walsh 2002b). Despite the high

prevalence of dementia and behavioural problems, depression and other psychiatric disorders, such

conditions tend to be under-recognized and poorly managed in the AL setting (Gruber-Baldini et al.,

2004; Magsi & Malloy, 2005; Rosenblatt et al., 2004; Ruckdeschel & Katz, 2004; Watson et al., 2003).

The proliferation of specialized dementia care units in AL settings also challenges researchers and

policy makers to better understand the definition, integration and role of such specialized units in

relation to resident quality of care and outcomes (Davis et al., 2000; Grunier, Lapane, Miller, & Mor,

2008; Reimer, Slaughter, Donaldson, Currie, & Eliasziw, 2004; Samus, Mayer, & Baker, 2008; Sloane

et al., 2005). It is also increasingly evident that families may be filling important care provision and

oversight gaps in AL settings (Mead, Eckett, Zimmerman, & Schumacher, 2005; Sloane et al., 2005).

Although increased opportunities for family involvement may be viewed positively by residents and

their families (and by proponents of the AL model), it is important to delineate the potential limits of

assistance beyond which further care may pose increased risks to the caregiver’s and care-recipient’s

health and well-being (Port et al., 2005). Caregivers of AL dementia residents have been found to

rate their involvement in monitoring the resident’s medical status, well-being and finances (and their

burden) significantly higher than their nursing home counterparts (Port et al., 2005).

With the significant shift to AL in our province (AHW, 2008b; ASCS, 2009) comes a critical need for

research to provide a strong empirical basis for policy and practice recommendations regarding the

appropriate care of seniors with ADRD and/or depression. In response to this need, our program has

highlighted policy, program and practice issues pertinent to the appropriate care of older adults (and

support of their family caregivers) across urban and rural AL and LTC settings in Alberta.

Approach and Methods Our research capitalized on an existing large-scale AL/LTC prospective cohort, the Alberta

Continuing Care Epidemiological Studies (ACCES) Program. ACCES represented the first Canadian

study to address the quality of care and outcomes of residents in AL and LTC settings. The overall

ACCES Program and this Mental Health Sub-Study involved a collaborative network of researchers,

clinicians, continuing care providers and decision-makers. All team members had extensive

experience in the care of older adults with dementia and/or depression.

ACCES Sample

During 2006-09, comprehensive baseline and 1-year follow-up assessments were conducted on

1,089 residents (aged 65+ years) of 59 designated (publicly funded) AL facilities and a stratified, two-

stage random sample of 1,000 residents (aged 65+ years) within 54 LTC facilities across urban and

rural regions. This included 58% of AL and 71% of LTC residents with a diagnosis of ADRD and 34%

of AL and 44% of LTC residents with a diagnosis of depressive illness. ACCES also collected

longitudinal family/friend caregiver (974 and 917 caregivers of AL and LTC residents, respectively),

facility/program, and health system data. Copies of the ACCES instruments used to assess residents

(RAI tools), family caregiver, and facility factors are available upon request.

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Alberta Addiction & Mental Health Research Partnership Program 7

Data Sources and Measures (i) Resident Needs, Service Use and Functional Outcomes (ACCES Resident Assessment Instruments) Longitudinal resident-level data were derived from the interRAI

d instruments for assisted living and

long term care administered by trained study nurses. These instruments provide a comprehensive

and standardized assessment of residents’ sociodemographic characteristics, physical and cognitive

status, psychological and health conditions, behavioural problems, formal and informal service use

and use of prescription and over-the-counter drugs. Their reliability and validity have previously been

established (Hawes et al., 1995; Hirdes & Carpenter, 1997; Morris et al., 2002). Data on disease

diagnoses (including ADRD and depression) are abstracted from medical records as recorded by

treating physicians. The RAI instruments include a number of validated and clinically important health

and functional status indicators (Table 3.1-Appendix 3), including: the Cognitive Performance Scale

(CPS scored 0-6) (Hartmaier et al., 1995; Morris, Fries, & Mehr, 1994); Depression Rating Scale

(DRS scored ≥3) (Burrows, Morris, Simon, Hirdes & Phillips, 2000); Activities of Daily Living Self-

performance Hierarchy scale (ADL scored 0-6) ( Morris, Fries, & Morris, 1999); Health Status Index

(HSI: a health-related quality of life index scored 0-1.0) (Wodchis, Hirdes, & Feeny, 2003); Changes

in Health and End Stage Disease Scale (CHESS: a scale of health instability scored 0-5) (Hirdes,

Frijters, & Teare, 2003); and other scales for pain (frequency and intensity) (Fries, Simon, Morris,

Flodstorm, & Bookstein, 2001), social interaction (Schroll, Jonsson, & Mor, 1997) and aggressive

behaviour (Perlman & Hirdes, 2008). Also included are items on residents’ past mental health status

and utilization, current psychiatric symptoms, recent care by a mental health professional, and

medication use. The implementation of RAI instruments across various care settings in recent years

has facilitated numerous international studies on the quality of care of vulnerable seniors, including

studies of dementia, depression, pain and medication use (Alanen, et al., 2008b; Alanen, Finne-

Soveri, & Leinonen, 2008a; Buttar, Mhyre, Fries, & Blaum, 2003; Carpenter, Hastie, J. Morris, Fries,

& Ankri, 2006; Feng et al., 2009; Fialova et al., 2005), several of which were conducted by our team

(Dalby et al., 2008; Gruneir, Miller, Intrator, & Mor, 2007; Hirdes et al., 2000; Maxwell et al., 2008; Vik

et al., 2006; Walker et al., 2009; Wodchis et al., 2007).

(ii) Family Characteristics (ACCES Caregiver Interview)

In ACCES, a comprehensive in-person interview was developed and administered to all consenting

AL and LTC residents’ primary informal (family/friend) caregiver. It includes items on the provision of

informal care; the arrangement, costs and payment sources of formal care services (including mental

health care); awareness of facility policies; residents’ transitions across care settings, related wait

times and health care use; satisfaction with quality of care; opportunities provided for caregivers to be

well informed and involved in care processes; and indicators of caregiver well-being and burden. It

draws on the tool developed, validated and employed in the Canadian and Manitoba Study of Health

and Aging (C/MSHA) (Canadian Study of Health and Aging Working Group [CSHAWG], 1994a;

Canadian Study of Health and Aging Working Group [CSHAWG], 1994b; Manitoba Study of Health

and Aging Research Group [MSHARG], 1995; Manitoba Study of Health and Aging Research Group

[MSHARG], 1998) and an instrument developed by a U.S. National AL study (Hawes et al., 2000).

(iii) Facility/Program Characteristics (ACCES Facility Survey)

In ACCES, a comprehensive facility survey was developed and administered in-person to a lead

facility administrator (around mid-point of the study period). This administrator (often a director of care

or manager) had to be someone familiar with the facility and with direct knowledge about the

d InterRAI is a 30-country, not-for-profit research network committed to improving the health and quality of care of

vulnerable seniors. Its fellows are responsible for the development and validation of all RAI tools and data applications (www.interrai.org).

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Alberta Addiction & Mental Health Research Partnership Program 8

residents. Items include: bed size; owner/operator status (for-profit or not); urban/rural indicator;

availability of on-site medical and acute care; dementia special care unit spaces; mix of care

providers; staff-resident ratios; staff turnover rates; use of and adherence with practice

protocols/guidelines; policies and practices; admission/discharge criteria; integration with other levels

of care/agencies; service provision (including involvement of mental health professionals) and costs.

(iv) Policy and System Characteristics (Published Reports and Key Informant Interviews)

Data on regional and provincial mental health/continuing care policies, programs, service availability

and integration and approaches to regulatory oversight (including strategies/data used to monitor and

manage quality of care issues) (Alberta Health & Wellness [AHW], 2008a) were obtained via a review

of historical and current policy/planning documents and face-to-face interviews with lead decision-

makers across care settings. Many of these decision-makers were partners on our proposal. Relevant

policy variables included: the presence and intensity of regulatory oversight (e.g., policies and

standards required of AL and LTC providers relevant to accommodation, health, safety, and

appropriate mental health care) (Alberta Health & Wellness [AHW], 2007a; AHW, 2008a); funding and

service levels for AL and LTC; admission threshold policies; and, availability and integration of

community-based mental health services and outreach.

(v) Health and Health Service Use Outcomes

Residents’ longer term health outcomes were examined via linkage of individual RAI data with

provincial administrative health databases (including inpatient hospitalizations, emergency

department and ambulatory care visits) using personal health care numbers (where consent was

provided in ACCES). In key analyses, the primary outcomes included time to first-acute care

hospitalization, long-term care placement (AL cohort only) and death within a year of residents’

baseline assessment. The date of admission, most responsible diagnosis (based on ICD-10-CA

codes) (Canadian Institute of Health Information [CIHI], 2001), length of stay, and Alternate Level of

Care (ALC) bed-days (i.e., occupying a hospital bed when not requiring the intensity of

resources/services provided in this care setting) were examined.

Detailed information on other transitions was obtained from facility discharge tracking forms (provided

at the time of transfer or death), family caregiver discharge/decedent interviews (performed around

the time of transfer or death), and family caregiver interviews at one-year follow-up (assessing all

moves from baseline).

Analyses

Descriptive analyses examined the distribution of DAL and LTC resident, family caregiver and facility

characteristics, overall and by outcome status. Comparisons were made across diagnostic groups

(e.g., residents with and without ADRD and/or depression) and across care settings. Incidence of

selected care transitions (e.g., hospitalization and long-term care placement) were derived for DAL

and LTC cohorts accounting for the occurrence of death as a competing risk using Cumulative

Incidence Competing Risk (CICR) curves (Berry, Ngo, Samelson, Kiel, 2010).

Multivariable Cox proportional hazards models (Fine & Gray, 1999; Murphy et al., 2011); were used

to examine the relative importance of resident and facility characteristics as predictors of time to first

event (for acute care hospitalization, long-term care placement and mortality) during the 1-year

follow-up. Clustering of residents within facilities was accounted for by calculating robust sandwich

standard errors (Lee, Wei, Amato, & Leurgans, 1992). Baseline resident and facility characteristics

examined as potential predictors of core outcomes were selected based on previous literature

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Alberta Addiction & Mental Health Research Partnership Program 9

(Gruneir, Miller, Intrator, & Mor, et al., 2007; Lyketsos et al., 2007; Phillips et al., 2003; Sloane et al.,

2005).

For health outcome models requiring linkage with administrative health databases, the analyses were

restricted to 1,066 DAL residents (3 residents had unknown outcomes and 20 refused consent for

administrative data linkage) and 976 LTC residents (3 residents could not be linked with

administrative data and 21 did not consent to data linkage). These cohorts included 609 (57%) DAL

residents and 691 (71%) LTC residents with a diagnosis of ADRD.

All analyses were conducted using SAS version 9.2 and R version 2.13-1.

Ethics

Ethics approval was obtained from the University of Calgary Conjoint Health Research Ethics Board,

the University of Alberta Health Research Ethics Board and the University of Lethbridge Human

Subject Research Committee. Research approval was also provided by the Health Regions and

Provider Organizations involved in ACCES. Residents (or their surrogates) participating in ACCES

provided written informed consent, including permission for their individual level RAI data to be linked

with other administrative databases.

Key Findings Analyses of our DAL and LTC cohorts included in the overall ACCES program and in this Mental

Health Sub-Study are ongoing. The summary below provides selected findings emerging from our

work to date. Core deliverables from this program have also been published and presented at several

conferences and invited workshops over the past few years (please see the summary of Publications

and Presentations at the end of this report).

Distribution of Resident, Family/Friend Caregiver and Facility Characteristics

A comprehensive descriptive profile of DAL and LTC residents, their family caregivers and the

facilities in which they resided during the research program can be found in the following published

report:

Strain, L. A., Maxwell, C. J., Wanless, D., & Gilbart, E. (2001). Designated Assisted Living (DAL)

and Long-Term Care (LTC) in Alberta: Selected Highlights from the Alberta Continuing Care

Epidemiological Studies (ACCES). Edmonton, AB: ACCES Research Group, University of

Alberta. http://hdl.handle.net/10402/era.23779

Below is a selected summary of resident characteristics by care setting (DAL v. LTC) and by the

presence/absence of an ADRD diagnosis. Further comparisons (e.g., of DAL and LTC residents with

ADRD and the facilities in which they resided) are presented in Resident and Facility Predictors of

Acute Care Hospitalization (DAL v. LTC cohort).

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Alberta Addiction & Mental Health Research Partnership Program 10

Table 1: Selected Resident Characteristics by Dementia Diagnosis: DAL and LTC Residents

DRS = depression rating scale where a score of 3 or more indicates the presence of clinically significant

depressive symptoms

Figure 1: Activities of Daily Living Impairment by Dementia Diagnosis: DAL and LTC

Residents

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Alberta Addiction & Mental Health Research Partnership Program 11

Figure 2: Most Common Diagnoses: DAL and LTC Residents

In the above table and figures, the abbreviations refer to the following: DRS = depression rating scale

where a score of 3 or more indicates the presence of clinically significant depressive symptoms: dem

= dementia (ADRD); hyper = hypertension; arth = arthritis; dep = depression diagnosis; osteop =

osteoporosis; chd = coronary heart disease; cvd = cerebrovascular disease; diab = diabetes; chf =

congestive heart failure; thyroid = thyroid disease; copd = chronic obstructive pulmonary disease;

anxiety = anxiety disorder.

Preliminary analyses of family caregivers of DAL and LTC residents with dementia have been

conducted. Assessments of data collected from 582 DAL and 650 LTC family caregivers illustrate a

number of relevant findings as outlined below:

DAL family caregivers were significantly younger (average age 58.1 years) than LTC family

caregivers (average age 62.1 years) but showed a similar distribution in gender (70% were

women in both settings);

DAL family caregivers were significantly more likely to be daughters (52% v. 42% in LTC) and

less likely to be a spouse (6% v. 18% in LTC);

48% of DAL and 49% of LTC family caregivers lived <15 km from the resident and there was no

significant difference in the frequency of visiting between DAL and LTC family caregivers;

DAL family caregivers were significantly more likely than LTC family caregivers to state that they

sometimes or always do the following during their visits:

o Take the resident for a drive

o Watch television

o Play games

DAL family caregivers were significantly more likely than LTC family caregivers to have

performed the following tasks in the last month:

o Telephoned to see how the resident was doing

o Drove the resident to appointments and made appointments for the resident

o Talked to the family physician and specialist about the resident

o Contacted home care or other agency

0 10 20 30 40 50 60 70 80 90 100

anxiety

copd

thyroid

chf

diab

cvd

chd

osteop

dep

arth

hyper

dem

16

19

20

22

23

24

29

32

34

54

56

58

%

DAL

Mean 4.6

Range 0 - 14

(71)

(59)

(52)

(44)

(35)

(31)

(31)

(24)

(21)

(20)

(19)

(20)

LTC

Mean 5.2

Range 0 – 12

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Alberta Addiction & Mental Health Research Partnership Program 12

There were no significant differences between DAL and LTC family caregivers in:

o Positive self-esteem

o Financial problems associated with caring for the resident

o Health problems

DAL family caregivers were, however, more likely than LTC caregivers to report disruptions in

their daily schedules because of caregiving.

Resident and Facility Predictors of Long-term care Placement (DAL cohort) The assisted living philosophy implies that older adults receiving care will age in place, but admission

and discharge criteria often make that impossible. The lower staffing rates and variability in services

across facilities suggest the potential for poorer detection and management of emerging health issues

and adverse health outcomes among ADRD residents. Our aim in this investigation was to estimate

the incidence of long-term care (LTC) placement over 1 year among older DAL residents with ADRD

and to identify resident- and facility-level predictors of LTC admission and mortality over 1-year

among this resident sample. Among the 1,089 DAL participants, 627 (58%) had a diagnosis of ADRD

and 625 were included in these analyses (2 subjects had unknown outcomes).

The dementia cohort was predominantly female (78%), widowed (73%) and had a mean age of

85.2±6.7 years (Table 4.1, Appendix 4). About 21% had poor or no social relationships and 51%

showed little involvement in activities. The prevalence of clinically significant depressive symptoms

was 23%. Residents were generally less impaired in physical as compared with cognitive functioning

(e.g., 32% were independent in ADLs whereas 5% were cognitively intact). Moderate to more severe

aggression was exhibited by 40% of residents. Slightly more than half (53%) showed health

instability. Only 29% walked independently. Most were continent of bowel (68%) with fewer continent

of bladder (38%). In the past three months, 29% had experienced a fall and 21% had a

hospitalization/ED visit. Residents had a mean of 4.8±2.0 (range 0-14) diagnoses.

During follow-up, 156 (25%) residents were admitted to a LTC facility (28 subsequently died within

the year), 79 (12.6%) died without LTC admission, 10 (1.6%) were discharged to another setting (at

follow-up, 5 were in acute care hospital, 3 private residence, 1 transition bed, and 1 in a non-study

health region) and 380 (60.8%) remained alive and in a DAL facility (361 in the same facility as

baseline). Several resident and facility characteristics showed significant bivariate associations with

one year outcomes (Tables 4.1 & 4.2, Appendix 4).

The rate of admission to LTC was 29.9 per 100 person-years. Figure 3 presents the cumulative

incidence of LTC admission by follow-up time (in months). Both the Kaplan-Meier (K-M) and the

Cumulative Incidence Competing Risk (CICR) curves are shown. Note: the K-M curve slightly

overestimates the cumulative incidence as this represents the estimate prior to adjusting for the

competing risk of death as done with the CICR curve. As illustrated in this Figure 3, the cumulative

incidence of LTC admission was 12.7% (95% CI 10.1-15.3%) by 6-months and 24.0% (20.6-27.4%)

by 12-months in persons with a dementia diagnosis.

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Alberta Addiction & Mental Health Research Partnership Program 13

Figure 3 Cumulative incidence of LTC placement during 1 year follow-up, ACCES-DAL Cohort (n=625 with dementia).

In adjusted analyses, a significantly increased risk for LTC placement was observed for residents with

poor social relationships, impairment in activities of daily living, moderate to high health instability

(CHESS score 3+), recent hospitalizations/ED visits, and frequent bladder incontinence or no control

(Table 4.3, Appendix 4). Residents with little involvement in activities, very severe aggressive

behaviours and higher drug use showed an increased (non-significant) risk for placement. Depressive

symptoms were highly correlated with several variables predictive of LTC admission including low

levels of social engagement and health instability and did not remain significant in the fully adjusted

model. Health region showed a significant association with LTC placement (with residents from

regions 2, 4 and 5 showing a reduced risk for placement compared with region 1). Community size

(rural, mixed rural-urban, large urban) was highly correlated with region and was not retained in the

multivariable models.

In models adjusted for resident characteristics and region, a significantly lower risk of LTC placement

was observed for residents from facilities with a larger number of DAL spaces (30+), and a larger

number of total spaces (Table 4.4, Appendix 4). Residents from facilities with a licensed practical

nurse and/or registered nurse on site 24/7 (vs. <24/7), a primary care physician affiliated with the site,

and with recent involvement of a mental health professional showed a (non-significant) reduced risk

of LTC admission.

Other resident (e.g., age, sex, marital status, #hours of informal care, comorbidity, and use of

dementia pharmacotherapy [cholinesterase inhibitor and/or memantine]) and facility-level

characteristics (e.g., for-profit status, whether facility was part of a chain [AL and/or LTC], year DAL

spaces opened, level of care available on site) were not significant predictors of LTC placement for

DAL residents with ADRD in adjusted analyses.

Resident and Facility Predictors of Acute Care Hospitalization (DAL v. LTC cohort)

Within North America, Assisted Living provides an increasingly popular residential option for seniors

with Alzheimer’s disease and related disorders (ADRD), yet the setting remains poorly defined and

understood. Quality of care concerns based on lower staffing rates and service availability compared

with nursing homes, suggest some ADRD residents may be at increased risk for various adverse

outcomes (including hospitalization) as their condition progresses. Our aim in this investigation was to

Time to event (Months)

Cum

mul

ativ

e In

cide

nce

0 1 2 3 4 5 6 7 8 9 10 11 12 13

0.00

0.05

0.10

0.15

0.20

0.25

0.30

CICR

K-M

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Alberta Addiction & Mental Health Research Partnership Program 14

estimate the incidence of hospitalization over 1 year for dementia residents of designated AL (DAL)

facilities compared with LTC facilities across Alberta and to identify resident- and facility-level

predictors of hospitalization among DAL residents with dementia.

Linkage with administrative records (discharge abstract database) was available for 97% (609/627) of

DAL residents and 97.6% (691/708) of LTC residents aged 65+ years with a diagnosis of ADRD.

Table 5.1 (Appendix 5) presents a descriptive profile of the baseline characteristics of DAL and LTC

residents with a diagnosis of ADRD. Designated assisted living residents with dementia were typically

older widowed women (mean age 85.7±6.6 years, 73.2% widowed and 78% female). Mean number

of diagnoses was 4.8±2.0 (range 1-14) with hypertension (56.8%), arthritis (51.7%), depression

(36.0%), osteoporosis (29.7%), and coronary heart disease (28.1%) the most common. On average,

residents were on 7.7 ± 3.6 medications (range 0-23) with 42.7% receiving dementia

pharmacotherapy (primarily donepezil). Approximately one-tenth were reported to have a “Do Not

Hospitalize” advance directive. The proportion hospitalized as their first event did not differ between

those with (33.3%) and without (36.4%) this advance directive. Approximately two thirds of DAL

residents with dementia (n=388) resided in a facility with an LPN and/or RN on site 24 hours a day, 7

days a week and 42.2% (n=257) in a facility with dementia beds.

Relative to DAL, LTC residents with dementia were more likely to be male and married (Table 5.1,

Appendix 5). They were more likely to have weak social relationships, to be less active, and to have

greater health issues, cognitive and functional impairments, mood and behavioural challenges, and

comorbidity. The two cohorts were similar in the proportion with recent falls and high levels of

medication use, although residents with dementia in LTC were significantly less likely (21.6%) than

those in DAL (42.7%) to be receiving dementia pharmacotherapy. LTC residents were significantly

less likely (21.8%) than DAL (32.2%) residents to have been admitted to hospital during the year prior

to baseline. Nearly one-third of LTC residents were reported to have a “Do Not Hospitalize” directive.

Of this group, 14 (6.2%) were admitted to hospital as their first event compared to 60 (12.9%) without

such a directive (p = 0.008). LTC facilities were more likely to have not-for-profit ownership, less likely

to be part of a chain (with AL and LTC sites), were generally older with more beds and universally

had 24 hours a day, 7 days a week LPN/RN coverage on site. LTC sites were significantly more likely

than DAL sites to have a physician affiliated with the site.

During the one-year follow-up, 220 (36.1%) DAL residents with dementia experienced an acute care

hospitalization as their first event. The rate was 51.7 per 100 person-years. The cumulative incidence

was 23.3% (95% CI 19.9-26.8) at 6 months and 38.6% (95% CI 34.5-42.7%) at 12 months (Figure

4A). The median length of stay (LOS) for hospitalizations was 14 days (interquartile range [IQR] 5 to

43 days). Total bed days were 6485. Sixty-four (29.1%) had one or more ALC bed-days (total ALC

bed-days = 1391; median ALC length of stay 12.5, range 1-93, IQR 6.5 to 32.5).

During the one-year follow-up, 74 (10.7%) LTC residents with dementia experienced an acute care

hospitalization as their first event. The corresponding CICR estimate for the LTC cohort is presented

in Figure 4B. The cumulative incidence of hospitalization was 5.9% (95% CI 4.2-7.7%) at 6 months

and 10.3% (95% CI 8.0-12.6%) at 12 months (significantly lower than that observed for DAL residents

with dementia, p<0.001). Median LOS was 7 days (IQR 3 to 13 days) and total bed days were 717.

One admission (1.4%) had any ALC bed-days (16 total ALC bed-days).

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Alberta Addiction & Mental Health Research Partnership Program 15

Figure 4 Cumulative incidence of hospitalization during 1 year follow-up, ACCES-DAL (n=609) [A] and ACCES-LTC Dementia Cohorts (n=691) [B] A B

For both the DAL and LTC dementia cohorts, the common causes for hospitalization are described in

Table 5.2, Appendix 5.

In adjusted analyses, a significantly increased risk for hospitalization was observed for DAL dementia

residents aged 90+ years, with poor social relationships, less severe cognitive impairment, moderate

to severe fatigue, hyperpolypharmacy (i.e., use of 11+ medications), and 2+ hospitalizations during

the preceding year (Table 5.3, Appendix 5). Residents with some health instability and those with

bowel incontinence had a modestly increased risk. DAL residents from selected (primarily rural)

health regions showed a higher risk of hospitalization. Community size was highly correlated with

region and not retained in the models.

In models adjusted for resident characteristics and health region, a significantly higher likelihood of

hospitalization was observed for residents from DAL facilities that were smaller (<20 DAL spaces).

Residents from facilities with no chain affiliation also showed an increased risk of hospitalization

(Table 5.4, Appendix 5). Given the increased hospitalization risk for residents within rural regions as

well as findings showing these regions were significantly more likely to include DAL facilities that were

small, not part of a chain and had neither a LPN nor RN on site, we examined separate models for

each of our facility factors excluding health region. The results showed stronger estimates for the

above facility factors (e.g., adjusted hazard ratios of 2.30 [1.55-3.39] for residents of small facilities

and 2.08 [1.18-3.64] for residents of facilities with no chain affiliation) as well as a significant

hospitalization risk for resident of facilities with no LPN and/or RN on site (adjusted hazard ratio of

1.61 [1.16-2.24]).

Other resident characteristics (e.g., sex, ADL impairment, comorbidity, aggressive behaviours,

depressive symptoms, # hours of informal care, marital status, advance directives, dementia

pharmacotherapy [cholinesterase inhibitors and/or memantine]) were not significantly associated with

hospitalization in our fully adjusted models. Additionally, no other facility characteristics were

significantly associated with hospitalization among DAL residents with dementia.

Acute Care Transitions and Outcomes among DAL Residents with and without Dementia.

Acute care hospitalization poses particular risks for persons with dementia and comorbid illness,

including increased hospital stays and poor outcomes following discharge. Our aim in this

investigation was to identify the risk (and associated determinants) of hospitalization and outcomes

following discharge (e.g., death, re-hospitalization, transfer to long-term care) among older residents

of designated assisted living (DAL) facilities, comparing those with and without dementia.

Time to Hospitalization (Months)

Cum

mula

tive I

ncid

ence

0 1 2 3 4 5 6 7 8 9 10 11 12 13

0.00

0.05

0.10

0.15

0.20

0.25

0.30

0.35

0.40

0.45

0.50

0.55

0.60

0.65

0.70

0.75

0.80

CICR

K-M

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Alberta Addiction & Mental Health Research Partnership Program 16

Among older adults residing in designated assisted living (DAL) facilities, residents with dementia

were significantly older and more likely to have poor social relationships and activity levels,

depression, cognitive and functional impairment, multi-morbidity, and aggression than residents

without dementia. Conversely, they were less likely to be using multiple drugs or to experience a

hospitalization (in the year prior- and post- baseline assessment). The adjusted hazard ratio (HR)

(95% confidence interval) for hospitalization during the 1-year follow-up among residents with

dementia was 0.99 (95%CI 0.79-1.26) - indicating no increased risk for those with dementia v. without

dementia.

However when hospitalized, residents with dementia had longer hospital and Alternate Level of Care

(ALC) bed stays (220 hospital events: median 14 days, total bed days=6488) than those without

dementia (193 hospital events: median 10 days, total bed days=3903). Following hospital discharge,

those with dementia were significantly more likely to be admitted to long-term care (31% v. 12%) and

less likely to be re-hospitalized (16% v. 36%) during follow-up (mortality rates during and post-

hospitalization did not vary significantly between the dementia and non-dementia groups).

In summary, older DAL residents with and without dementia showed a comparable risk of first event

hospitalization. However, residents with dementia were more likely to have longer total and ALC bed

stays when hospitalized, possibly increasing their risk for functional decline. Their lower risk of re-

hospitalization (concurrent with their increased risk for long-term care placement) following hospital

discharge supports the notion that admission to a nursing home may lead to a reduction in hospital

use.

Conclusions Our study represents the first in Canada to examine the health characteristics and outcomes of older

residents with ADRD and/or depression receiving care in a diverse range of designated assisted

living (DAL) and LTC facilities. The expansion and variability of assisted living across Canada

coupled with the heterogeneity in the functional, psychosocial and health needs of residents with

ADRD and mental health conditions in this setting makes it an important area for research. Our

findings regarding resident- and facility-level predictors of long-term care placement and admission to

hospital among DAL residents with ADRD highlight various clinical and policy areas where targeted

interventions may prevent (or delay) institutionalization and hospitalization among this vulnerable

older population. Our findings also provide compelling evidence of the importance of policy and

organizational characteristics specific to the assisted living sector which have important implications

for the wider health care system (including long-term care and acute care service use and costs).

IMPLICATIONS FOR POLICY OR PRACTICE Assisted Living is rapidly expanding as a housing option for seniors with significant cognitive and

functional needs. Our findings show that not only are mental health conditions (including ADRD and

depression) prevalent among older residents in (designated) assisted living (DAL) facilities in Alberta –

their health and social needs are significant. While often viewed as an alternative to traditional LTC care,

one quarter of DAL residents with ADRD in Alberta required LTC admission over one year. In addition,

residents with ADRD residing in DAL showed a cumulative incidence of hospitalization approximately 3

times higher than that observed for LTC residents with ADRD.

Our study represents one of the few to examine a wide array of factors (at the resident and facility level)

that may predict LTC placement in a cohort of AL residents with dementia. We found that residents with

poor social relationships, higher levels of activities of daily living (ADL) impairment and health instability,

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Alberta Addiction & Mental Health Research Partnership Program 17

significant bladder incontinence and recent hospitalization or visits to the emergency department were

more likely to be admitted to a LTC facility during the 1-year follow-up. Interestingly, we found that only a

few facility/system level characteristics were significantly associated with LTC placement in our DAL

cohort with ADRD. Specifically, residents from particular health regions and from larger sized facilities

were significantly less likely to be institutionalized during follow-up. Larger size may provide opportunities

for more skilled staffing or a greater array of services. The importance of health region may highlight the

relevance of many system and policy factors that we did not capture with our study measures (including

variations across the province in bed capacity, supportive care and long-term care options, and recent

continuing care policies and reforms). Overall, our findings highlight various clinical and policy areas

where targeted interventions may prevent or delay LTC admissions. These include strategies to enhance

residents’ level of social and activity engagement and to educate AL staff to better detect social

vulnerability. The increased risk of placement associated with bladder incontinence and ADL impairment

is noteworthy given that reported admission and retention criteria for DAL would (in some cases) permit

the ongoing care for such residents.

Admission to a nursing home may lead to a reduction in hospital use, whether this is also true for assisted

living represents a key policy question in assessing the potential impact on other components of the

health care system if AL displaces LTC as a housing option for vulnerable seniors. An important finding

was the significantly lower rate of hospitalization concurrently seen among LTC residents with ADRD

(despite their generally worse baseline health) compared with DAL residents. Overall, our hospitalization

findings raise concerns about the ability of AL facilities to safely care for vulnerable residents (with

emerging health issues) and highlight clinical, social and policy areas where targeted interventions may

reduce the rate of potentially avoidable hospitalizations. Hospitalization risk was associated with a

number of characteristics that could be used for targeting (e.g., frequent prior hospitalizations, fatigue or

frailty) and/or developing interventions (e.g., optimizing medication use, enhanced social activities and

engagement, staffing, service availability). A shift towards AL from LTC for the supportive care of

vulnerable seniors, as proposed in Alberta and elsewhere in Canada, could have an unintended impact

on the demand for hospital beds. While our study does not indicate the “correct” rate of hospitalization,

we believe a proportion of the hospital admissions for DAL residents with dementia were potentially

preventable (with appropriate and timely care and clinical oversight). Avoiding such admissions would

protect residents from the negative consequences associated with hospitalization and mitigate the

attendant costs and inefficiencies arising from the inappropriate use of hospital beds. As presented

above, among DAL residents who were hospitalized, those with a diagnosis of ADRD were more likely to

have longer total and ALC bed stays when hospitalized, possibly increasing their risk for functional

decline and other adverse outcomes over time.

Our findings also support the importance of establishing (via discussions between residents, family and

facility providers), documenting and adhering to advance directives for older AL residents with ADRD and

mental health conditions. We showed that a “Do Not Hospitalize” directive was more commonly found

among LTC residents with dementia and even when present among DAL residents with dementia - it had

no evident impact on the likelihood of their hospitalization.

As the AL sector continues to grow and with expected increases in the clinical complexity of residents

with mental health needs, it will be critical for policy makers and providers to ensure that stated admission

and retention criteria reflect the availability of required services and staffing mix. The observed

importance of larger facility size, AL/LTC chain affiliation and greater availability of professional staffing to

important health outcomes among (designated) AL residents suggests that greater access to skilled

nursing care and other health care professionals/services may be required to monitor for early

manifestations of declining health and ensure the capacity to accommodate short-term illnesses on site.

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Alberta Addiction & Mental Health Research Partnership Program 18

DIRECTIONS FOR FURTHER RESEARCH There are a number of research and policy gaps related to the quality of care of older adults with ADRD

and/or depression residing within AL and LTC facilities that remain to be addressed (as summarized

below). Some of the priority areas for further research are being examined as part of the ongoing

analyses of data collected by the ACCES program and Mental Health Sub-Study. Additional research

targeting some of these areas is also underway through projects funded by the Public Health Agency of

Canada’s National Population Health Study of Neurological Conditions and by the new Canadian

Consortium on Neurodegeneration in Aging (CCNA).

1. An enhanced understanding of the risk for functional, cognitive and health decline among older residents with ADRD and/or depression following admission to AL – and of the resident, facility, family caregiver and policy factors most strongly associated with resident decline v. improvement.

2. The relevance of dementia special care units in AL and LTC settings in optimizing the quality of life, quality of care and health outcomes of older residents with ADRD.

3. The extent and health consequences of high risk/potentially inappropriate medication use among older AL and LTC residents with ADRD and/or depression – and the resident, facility and policy factors predictive of sub-optimal medication use.

4. An evaluation of targeted interventions to facilitate better access to (and coordination of) high quality mental health care across care settings and during residents’ transitions in care (e.g., from home to AL, from AL to acute care, from acute care to LTC, etc.) – this should include strategies to facilitate communication and integrated care plans among AL/LTC staff, primary care physicians, pharmacists, geriatricians and psychiatrists. Also relevant here would be an examination of the extent and adequacy of mental health training among levels of care staff in AL and LTC (particularly in relation to provincial efforts to define core competencies in the care of older vulnerable populations with ADRD and/or depression, anxiety and related disorders).

5. An evaluation of the potential for targeted interventions (e.g., to facilitate social engagement and activity) to delay functional/cognitive decline and ultimately, LTC admission and other adverse outcomes (including hospitalization) among AL residents with dementia and/or depression.

6. The quality of life outcomes experienced by older AL and LTC residents with ADRD and/or depression and the associated determinants (including facility- and family-level factors).

7. The positive and negative experiences of family/friend caregivers involved with the care of older AL and LTC residents with ADRD and/or depression – this should include an examination of the extent of any off-loading of care and financial responsibility to caregivers associated with the substitution of LTC with AL models of care and any related consequences for the health and well-being of caregivers.

8. The evaluation of the impact of recent policy, facility and system changes in the AL care sector (particularly in relation to the care of older residents with ADRD and/or depression) on other aspects of the health care system (e.g., acute care, home care and long-term care sectors).

KNOWLEDGE DISSEMINATION AND TRANSLATION ACTIVITIES Our interdisciplinary team included researchers, providers and decision-makers and as such, greatly

facilitated particular knowledge dissemination and translation activities. Our collaborative work over the

past few years had led to a number of unique opportunities to leverage existing and new research and

training initiatives across Alberta and nationally.

The following is a summary of the key steps taken over the past few years to facilitate knowledge

dissemination and translation activities related to our CRGI grant.

(i) Activities among Team Members (including researchers, clinicians, decision-makers and providers):

Over the course of the program, we held regular teleconferences with our team members to

obtain their feedback on our planned objectives, data collection and analytical strategies and to

discuss findings from ongoing analyses of DAL and LTC residents with dementia and/or

depression across care settings in Alberta. These teleconferences were also used to identify new

areas for research, new opportunities for collaboration and additional funding opportunities in the

area of Continuing Care and Mental Health.

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Alberta Addiction & Mental Health Research Partnership Program 19

We held annual face-to-face meetings/workshops (one in April 2011 and one in Sept 2012) for

members of our Continuing Care Mental Health Research Group. The Sept 2012 date was

selected to follow the joint 2012 Canadian Coalition for Seniors Mental Health – Canadian

Academy of Geriatric Psychiatry Conference (CCSMH-CAGP) at the Banff Centre (September

21-22) to permit additional networking and research meetings with other Canadian investigators

working in the area.

Our 2-day annual meetings involved all team members as well as a few invited guests with

research/policy expertise relevant to our ongoing work. Researchers presented key findings to

the audience of clinicians, decision-makers and providers from across Alberta and solicited

feedback to help clarify/refine our objectives and analyses and to identify clear policy and clinical

implications of the work to date. These meetings concluded with a consensus ranking of next

phase research priorities. Should time and resources permit, we plan to host a final in-person

meeting/workshop (scheduled for early fall 2014) to obtain end-of grant input from team members

regarding the clinical and policy implications of our research and priority areas for further

research.

o PDF versions of all presentations from these meetings are available upon request.

As a result of the above networking activities, we expanded our collaborative network to include

clinical researchers and policy makers interested in dementia and mental health care across the

continuum of care settings for older adults in Canada. These collaborations include linkages with

colleagues at Queen’s University (Drs. Dallas Seitz & Sudeep Gill), the University of Waterloo

(Dr. Suzanne Tyas) and the University of Toronto/Institute for Clinical Evaluative Sciences (Drs.

Susan Bronskill & Walter Wodchis). Our expanded network has greatly enhanced the scope of

our research (e.g., to include studies of older adults with dementia and depression residing in

their own homes and in acute care settings) and facilitated the development of applications for

new funding (as described below under the Funding section).

(ii) Activities targeting provincial continuing care policy makers and providers:

We published two descriptive reports based on the ACCES study highlighting key findings and

methodological/technical issues. Summaries of these reports were distributed to all

provincial/regional decision makers and facility owners/operators involved in ACCES. Copies of

these reports are available via the following links:

o Strain, L. A., Maxwell, C. J., Wanless, D., & Gilbart, E. (2001). Designated Assisted

Living (DAL) and Long-Term Care (LTC) in Alberta: Selected Highlights from the Alberta

Continuing Care Epidemiological Studies (ACCES). Edmonton, AB: ACCES Research

Group, University of Alberta. http://hdl.handle.net/10402/era.23779

o Wanless, D., Strain, L. A., & Maxwell, C. J. (2011). Designated assisted living (DAL) and

long-term care (LTC) in Alberta: Alberta continuing care epidemiological studies (ACCES)

methodology. Edmonton, AB: ACCES Research Group, University of Alberta.

http://hdl.handle.net/10402/era.23788

During the course of our program, we have been invited to provide several presentations on our

research findings to annual meetings and conferences hosted by government decision-makers

and continuing care provider organizations (see Publications & Presentations section below).

Included were presentations to the Alberta Continuing Care Association, the Good Samaritan

Society, Extendicare, Alberta Health Services, The Canadian RAI Conferences and the Canadian

Coalition for Seniors Mental Health.

(iii) Activities targeting family caregivers and residents:

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Alberta Addiction & Mental Health Research Partnership Program 20

We published two descriptive summary reports for Family Caregivers based on the ACCES

study. These reports are available via the following links (in the University of Alberta Education

and Research Archives).

o DAL: http://hdl.handle.net/10402/era.23795

o LTC: http://hdl.handle.net/10402/era.23797

The extensive interviews we conducted with the almost 2000 family and friend caregivers as part

of the ACCES program (at baseline and the 1-year follow-up assessment times and during the

discharge of their loved one from the DAL or LTC facility) have provided rich data on the

involvement and views of family and friend caregivers. This includes their perspectives on the

quality and comprehensiveness of care received by their loved one across DAL and LTC settings

in Alberta as well as the extent of their involvement in providing and/or paying for care and related

services and devices and the impact of caregiving on their health and well-being. We are only just

now starting to analyze this rich data source – and further work in this area will be a priority over

the coming year.

Over the coming year, we plan to work with the Canadian Coalition for Seniors Mental Health and

with provider organizations (involved in ACCES) to identify opportunities and strategies to best

communicate our research findings to residents living with dementia and/or mental health issues

and to their family members and friends involved in their care.

(iv) Activities targeting researchers and clinicians:

Key findings emerging from our research program have been highlighted in a number of

published peer-reviewed papers and presentations at scientific & educational conferences (see

Publications & Presentations section below).

As our analyses of DAL and LTC residents included in the ACCES program and in this Mental

Health Sub-Study are ongoing, we will continue to submit our work to national and international

peer-reviewed journals and scientific conferences in mental health, aging and continuing care

over the coming year.

PRINCIPAL APPLICANT (TEAM LEADER) Name Position Title Topics of interest Colleen J. Maxwell PhD

Professor, Schools of Pharmacy and

Public Health & Health Systems,

University of Waterloo

Adjunct Professor, Community Health

Sciences, University of Calgary

Adjunct Scientist, Institute for Clinical

Evaluative Sciences (ICES), Toronto.

Dementia, Depression, Continuing

Care, Pharmacoepidemiology & Health

Services Research

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Alberta Addiction & Mental Health Research Partnership Program 21

PROJECT PARTNERS (TEAM MEMBERS) Name Position Title* Role Laurel A. Strain PhD Professor, Dept. of Sociology,

University of Alberta Academic team member & co-lead – supervisor/coordinator of all study activities and staff.

David B. Hogan MD Professor & Brenda Strafford Foundation Chair in Geriatric Medicine, Dept. of Medicine, University of Calgary

Academic team member – clinical and methodological input on data collection, analysis & synthesis, emphasis on dementia research.

Scott B. Patten MD PhD

Professor, Community Health Sciences, University of Calgary

Academic team member – clinical and methodological input on data collection, analysis & synthesis, emphasis on depression research.

Brad Hagen PhD RN RPsych

Associate Professor, Faculty of Health Sciences, University of Lethbridge

Academic team member – clinical input on data analysis & synthesis, emphasis on behavioural issues and antipsychotic use.

Andrea Gruneir PhD Scientist, Women’s College Research Institute, Women’s College Hospital & Adjunct Scientist, Institute for Clinical Evaluative Sciences (ICES), Toronto

Academic team member – methodological and research input on data collection, analysis & synthesis, emphasis on dementia, pharmacoepidemiology and special care units in long-term care.

Ken Le Clair MD Professor & Chair Geriatric Psychiatry, Queen’s University and Co-Chair, Canadian Coalition for Seniors’ Mental Health (CCSMH)

Decision/Policy Maker Partner – clinical, practice and policy input on data analysis, synthesis and dissemination, emphasis on policy implications and KT.

Kimberly Wilson, MSW

Past Executive Director, CCSMH, Present Lecturer, University of Guelph

Decision/Policy Maker Partner – research and policy input on data analysis, synthesis and dissemination, emphasis on policy implications and KT.

Carmen Grabusic Director, Continuing Care Branch, Alberta Health Past Senior Manager, Policy and Planning, Alberta Seniors and Community Supports

Decision/Policy Maker Partner – input on core objectives, data synthesis and dissemination, emphasis on policy implications.

Bruce West Executive Director, Alberta Continuing Care Association.

Decision/Policy Maker Partner – input on core objectives, data synthesis and dissemination, emphasis on practice and policy implications.

Corinne Schalm MSG MPA FCCHSE

Director, Access and Innovation, Continuing Care, Alberta Health Previously – VP Shepherd’s Care Foundation

Decision/Policy Maker Partner – input on core objectives, data synthesis and dissemination, emphasis on practice and policy implications.

Edythe A. Andison RN GNC(C)

Director of Quality Improvement, Good Samaritan Society.

Decision Maker & Continuing Care Provider – input on core objectives, data synthesis and dissemination, emphasis on practice and policy implications.

Melina Dharma-Wardene MPH MBA

Director – Quality and Service Development, Bethany Care Society

Decision Maker & Continuing Care Provider – input on core objectives, data synthesis and dissemination, emphasis on practice and policy implications.

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Name Position Title* Role Bridgette Berry Long Term Care Consultant,

Extendicare, Canada Decision Maker & Continuing Care Provider – input on core objectives, data synthesis and dissemination, emphasis on practice and policy implications.

Colin Zieber Executive Director, Seniors Health South Zone, Alberta Health Services

Decision/Policy Maker & Provider – clinical input on core objectives, data synthesis and dissemination, emphasis on practice and policy implications.

Monica Cepoiu-Martin MD MSc

Graduate (PhD) student, Community Health Sciences, University of Calgary

Graduate student/research associate working on the project. Monica is also utilizing data from this project for her PhD dissertation.

Joseph E. Amuah PhD

Senior Researcher, Health System Performance Branch, Canadian Institute for Health Information, Ottawa

Research associate working on the project (data linkage, management & analyses). Expertise in biostatistics, advanced modeling techniques and health services research.

Andrea Soo MSc Graduate (PhD) student, Community Health Sciences, University of Calgary

Research associate working on the project (data linkage, management & analyses). Expertise in biostatistics and health services research.

Erin Gilbart PhD Consultant, Community Health Sciences, University of Calgary.

Research associate working on the project (data analyses & report write-up). Expertise in health policy, continuing care, systematic reviews and health services research.

Deanna Wanless MA Previously, Alberta Centre on Aging and Department of Sociology, University of Alberta

Study coordinator and research associate working on the project (data management, analyses and report write-up). Expertise in gerontology, sociology and family caregiving.

*Note: Affiliation & location at time of the study

PUBLICATIONS AND PRESENTATIONS (i) Peer-reviewed Publications

Hogan, D. B., Amuah, J. E., Strain, L. A., Wodchis, W. P., Soo, A., Eliasziw, M., Gruneir, A., Hagen, B., Teare, G., & Maxwell, C. J.. (2014). High hospitalization rates among older residents in assisted living facilities: Opportunities for intervention and impact on acute care. Open Medicine, 8(1), 33-45. Maxwell, C. J., Soo, A., Hogan, D. B., Wodchis, W. P., Amuah, J. E., Gilbart, E., Eliasziw, M., Hagen, B., & Strain, L. A. (2013). Predictors of nursing home placement from assisted living settings in Canada. Canadian Journal on Aging / La Revue canadienne du vieillissement, 32(4), 333-48, Available on CJO 2013 doi:10.1017/S0714980813000469.

Tam-Tham, H., Cepoiu-Martin, M., Ronksley, P. E., Maxwell, C. J., &Hemmelgarn, B. R. (2013). Dementia case management and risk of long-term care placement: a systematic review and meta-analysis. International Journal of Geriatric Psychiatry, 28, 889-902. Hogan, D. B., Freiheit, E. A., Strain, L. A., Patten, S. B., Schmaltz, H. N., Rolfson, D., & Maxwell, C. J. (2012). Comparing frailty measures in their ability to predict adverse outcomes among older residents of assisted living. BMC Geriatric, 12, 56.

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Hirdes, J. P., Mitchell, L., Maxwell, C. J., & White, N. (2011). Beyond the “Iron Lungs of Gerontology”: Using evidence to shape the future of nursing homes in Canada. Canadian Journal on Aging, 30(3), 371-390. Freiheit, E. A., Hogan, D. B., Strain, L. A., Schmaltz, H. N., Patten, S. B., Eliasziw, M., & Maxwell, C. J. (2011). Operationalizing frailty among older residents of assisted living facilities. BMC Geriatrics, 11, 23.

(ii) Peer-reviewed Publications (submitted)

Maxwell, C. J., Amuah, J., Hogan, D. B., Cepoiu-Martin, M., Gruneir, A., Patten, S., Soo, A., LeClair, K., Wilson, K., & Strain, L., for the ACCES-Mental Health Research Group. (Submitted). Resident and facility predictors of hospitalization from Assisted Living among Older Residents with Dementia. Journal of the American Medical Directors Association. Maxwell, C. J., Cepoiu-Martin, M., Amuah, J., Hogan, D. B., Gruneir, A., Patten, S., Soo, A., LeClair, K., Wilson, K., & Strain, L., for the ACCES-Mental Health Research Group. (Submitted) Resident and facility predictors of long-term care admission from Assisted Living among Older Residents with Dementia. Alzheimer’s and Dementia.

(iii) Oral and Poster Presentations

Maxwell, C. J., Amuah, J., Hogan, D. B., Cepoiu-Martin, M., Gruneir, A., Patten, S., LeClair, K., Wilson, K., & Strain, L. A., for the ACCES-Mental Health Research Group. (2014, July). Acute care transitions and outcomes among assisted living residents with and without dementia. Poster presentation, Alzheimer’s Association International Conference, Copenhagen, Denmark, July 12-17, 2014. Abstract published in Alzheimer’s & Dementia: The Journal of the Alzheimer's Association 2014 Vol. 10, Issue 4, Supplement, Pages P735-6. Strain, L. A., & Maxwell, C. J. (2013, October). Far and farther: Adult children caring long-distance for parents in care settings. Oral presentation at 42

nd Annual Scientific and Educational Meeting

of the Canadian Association on Gerontology, Halifax, NS, October 17-19, 2013. Maxwell, C. J., Amuah, J., Cepoiu-Martin, M., Soo, A., Gruneir, A., Hogan, D. B., Patten, S., LeClair, K., Wilson, K., Strain, L. A. for the ACCES-Mental Health Research Group. (2012, September). Resident and facility predictors of hospitalization among older adults with dementia residing in assisted living facilities. Oral presentation at Canadian Coalition for Seniors’ Mental Health & Canadian Academy of Geriatric Psychiatry 2012 Joint Conference, Banff, AB, September 21-22, 2012. Maxwell, C. J., Bronskill, S., Leah, J., Jetté, N., Hogan, D., Patten, S., Heckman, G., Jantzi, M., & Hirdes, J. (2012, September). The course of depressive symptoms and associated factors among older home care clients. Oral presentation at Canadian Coalition for Seniors’ Mental Health & Canadian Academy of Geriatric Psychiatry 2012 Joint Conference, Banff, AB, Sept 21-22, 2012. Strain, L. A., & Maxwell, C. J. (2012, August). Families caring for assisted living and nursing home residents with dementia: Does setting matter? Oral presentation at International Sociological Association’s Second Forum of Sociology, Buenos Aires, Argentina, August 1-4, 2012. Maxwell, C. J., Amuah, J., Cepoiu-Martin, M., Soo, A., Gruneir, A., Hogan, D., Patten, S., LeClair, K., Wilson, K., & Strain, L. A. (2012, July). Resident and facility predictors of hospitalization among older adults with dementia residing in assisted living facilities. Oral presentation at Alzheimer’s Association International Conference, Vancouver, BC, July 14-19, 2012. Abstract published in Alzheimer’s & Dementia, 8(4) Suppl. P429.

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Cepoiu-Martin, M., Strain, L. A., Soo, A., Hogan, D. B., Patten, S., Gruneir, A., LeClair, K., Wilson, K., Amuah, J., & Maxwell, C. J. (2012, July). Resident and facility determinants of long-term care placement among older adults with dementia residing in assisted living facilities. Oral presentation at Alzheimer’s Association International Conference, Vancouver, BC, July 14-19, 2012. Abstract published in Alzheimer’s & Dementia, 8(4) Suppl. P251.

Cepoiu-Martin, M., Tam, H., Maxwell, C. J., Drummond, N., Ronksley, P., & Hemmelgarn, B. (2012, July). The effect of dementia case-management in community-dwelling individuals with dementia on resource utilization: A systematic review and meta-analysis. Poster presentation at Alzheimer’s Association International Conference, Vancouver, BC, July 14-19, 2012. Abstract published in Alzheimer’s & Dementia, 8(4) Suppl. P567. Maxwell, C. J., Soo, A., Strain, L. A., Hogan, D. B., Patten, S., Cepoiu-Martin, M., Gruneir, A., LeClair, K., Wilson, K., Amuah, J., on behalf of the ACCES-Mental Health Research Group. (2011, October). Factors associated with long term care placement among older adults with dementia residing in Assisted Living facilities. Poster presented at 6

th Canadian Conference on

Dementia, Montreal QC, October 27-29, 2011. Strain, L.A. & Maxwell, C.J. on behalf of the ACCESS Research Group (2011, October). Using RAI data: What did we learn from ACCES? Invited panel presentation in session “Using RAI Data to Improve Quality and Move Toward Best Practice”, IQ2011: Inspiring Quality in Continuing Care, Edmonton, AB, October 4-5, 2011. Maxwell, C. J., Strain, L. A., Hogan, D. B., Patten, S., Wanless, D., Gilbart, E., & Soo, A., on behalf of the ACCES-Mental Health Group. (2011, April). The Quality and Continuity of Mental Health Care for Seniors in Assisted Living and Long Term Care. Oral Presentation at Found in Translation Conference: Sharing Alberta Research for Mental Wellness in Seniors and Persons with Disabilities. Part of the Collaborative Research Grant Initiative. Edmonton, AB, April 18, 2011. Maxwell, C. J., Strain, L. A., Hogan, D. B., Patten, S., Wanless, D., Gilbart, E., & Cepoiu-Martin, M., on behalf of the ACCES-Mental Health Group. (2011, April). Dementia and Depression in Continuing Care Settings in Alberta: Priority Issues for Care and Policy. Poster Presentation (and winner Best Poster by Operating Grant Participant) at Found in Translation Conference: Sharing Alberta Research for Mental Wellness in Seniors and Persons with Disabilities. Part of the Collaborative Research Grant Initiative. Edmonton, AB, April 18, 2011.

Maxwell, C. J., Strain, L. A., Soo, A., Gilbart, E., Wanless, D., Hogan, D. B., Wodchis, W., Amuah, J., on behalf of the ACCES Research Group. (2011, April). Factors associated with long term care placement among residents of assisted living facilities. Oral Presentation at Canadian Geriatrics Society 31

st Annual Scientific Meeting, Vancouver, BC, April 14-16, 2011.

Freiheit, E. A., Hogan, D. B., Strain, L. A., Schmaltz, H. N., Patten, S., Eliasziw, M., & Maxwell, C. J. (2011, April). Operationalizing frailty among older residents of assisted living facilities. Oral Presentation at Canadian Geriatrics Society 31

st Annual Scientific Meeting, Vancouver, BC, April

14-16. 2011. (E. Freiheit was awarded the Edmund V. Cowdry Prize for best oral presentation by a graduate student). Maxwell, C. J., Freiheit, E. A., Hogan, D., Strain, L. A., Schmaltz, H. N., Patten, S., & Eliasziw, M. (2012, October). Operationalizing Frailty among Older Residents of Assisted Living Facilities. Oral Presentation at 2010 Canadian interRAI Conference, Toronto, ON, October 4-6, 2010. Maxwell, C. J., Gilbart, E., Strain, L. A., Wanless, D., Soo, A., Wodchis, W., Teare, G., Hogan, D., & Eliasziw, M. ( 2010, October). Factors Predicting Discharge to LTC among Residents in Alberta Assisted Living Facilities. Oral Presentation at 2010 Canadian interRAI Conference, Toronto, ON, October 4-6, 2010.

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Maxwell, C. J., Strain, L. A., Wodchis, W., Soo, A., Gilbart, E., Hogan, D., Teare, G., Wanless, D., & Eliasziw, M. (2012, September). Assisted Living in the continuum of continuing care in Canada: Implications for the health and well-being of residents and their family members. Oral Presentation at First International Conference on Evidence-based Policy in Long-term Care, Personal Social Services Research Unit, London School of Economics & Political Science, London, UK, September 10, 2010.

(iv) Invited Addresses Maxwell, C. J., Strain, L. A.,on behalf of the ACCES Research Group. (2010, December). Factors Predicting Discharge to LTC among Residents in Alberta Assisted Living Facilities. Invited Speaker, Alberta Continuing Care Association Board Meeting, Calgary AB, December 7, 2010. Maxwell, C. J., Strain, L. A., & Gilbart, E. (2010, January). Case Mix in Assisted Living and Long Term Care in Alberta. Invited Speaker at Alberta Health Services/CIHI/CHSRF - RUG Case Mix Knowledge Transfer Day, Edmonton AB, January 12, 2010. Maxwell, C. J. & Strain, L. A. (2009, June). Symposium on Assisted Living / Supportive Housing in Canada. Invited Speaker at 2009 Canadian RAI Conference: Pulling it all together – Integrating health information for planning, policy and practice. Halifax NS, June 24, 2009. Maxwell, C. J. & Strain, L. A. (2009, April). An Overview of Assisted Living in Canada and the ACCES Study. Invited Speaker at Extendicare Western Canada Business Meeting, Edmonton AB, Apr 23, 2009 Strain, L. A., & Maxwell, C. J. (2009, February). Designated Assisted Living in Alberta: Is this the new LTC? Invited Speaker at 8

th Annual Long Term Care Colloquium, Calgary AB, Feb 6, 2009.

(v) Technical Reports

Strain, L. A., Maxwell, C. J., Wanless, D., & Gilbart, E. (2011). Designated Assisted Living (DAL) and Long-Term Care (LTC) in Alberta: Selected Highlights from the Alberta Continuing Care Epidemiological Studies (ACCES). Edmonton, AB: ACCES Research Group, University of Alberta. http://hdl.handle.net/10402/era.23779 Wanless, D., Strain, L. A., Maxwell, C. J.. (2011). Designated Assisted Living (DAL) and Long-Term Care (LTC) in Alberta: Alberta Continuing Care Epidemiological Studies (ACCES) Methodology. Edmonton, AB: ACCES Research Group, University of Alberta. http://hdl.handle.net/10402/era.23788

ABOUT THE ALBERTA MENTAL HEALTH RESEARCH PARTNERSHIP PROGRAM The Alberta Mental Health Research Partnership Program is comprised of a broad-based multisectoral group, representing service providers, academic researchers, policy-makers and consumer groups, working together to improve the coordination and implementation of practice-based mental health research in Alberta. The mission of the Research Partnership Program is to improve mental health outcomes for Albertans along identified research priority themes, by generating evidence and expediting its transfer into mental health promotion, prevention of mental illness, and innovative service delivery. The Research Partnership Program sets out to increase Alberta’s excellence and output of mental health research findings, and to better translate of these findings into practice improvements.

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Dalby, D. M., Hirdes, J. P., Hogan, D. B., Patten, S. B., Beck, C. A., Rabinowitz, T., & Maxwell, C. J. (2008). Potentially inappropriate management of depressive symptoms among Ontario home care clients. International Journal of Geriatric Psychiatry, 23(6), 650-9.

Davis, K. J., Sloane, P. D., Mitchell, C. M., Preisser, J., Grant, L., Hawes, M. C, … Koch, G. (2000). Specialized dementia programs in residential care settings. Gerontologist, 40(1), 32-42.

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APPENDIX 1 List of Acronyms

Activities of Daily Living (ADL) Alberta Continuing Care Epidemiological Studies (ACCES) Alternate Level of Care (ALC) Alzheimer’s Disease and Related Dementias (ADRD) Assisted Living (AL) Cumulative Incidence Competing Risk (CICR) Depression Rating Scale (DRS) Designated Assisted Living (DAL) Hazard Ratio (HR) Interquartile Range (IQR) Kaplan-Meier (KM) Length of Stay (LOS) Long-Term Care (LTC)

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APPENDIX 2 Description of Assisted / Supportive Living, Designated Assisted Living and Facility Living in Alberta. As outlined below, the Supportive Living Framework developed by Alberta Seniors and Community Supports (March 2007, Retrieved from: http://www.seniors.alberta.ca/continuingcare/system/standardsframework.pdf ) highlights key differences between the types of facilities studied in ACCES (during the period 2006-2008). It should be noted that some changes in Supportive Living may have occurred within the province since this time (e.g., see Government of Alberta, Seniors. Supportive Living Guide. Supportive Living and Long-Term Care Branch, Alberta Seniors, January 2012. Available at: http://www.seniors.alberta.ca/ContinuingCare/system/SLGuide/SLGuide.pdf.). Supportive Living: Means a philosophy and an approach for providing services within a housing environment. It provides a home-like setting where people maintain control over their lives while also receiving the support they need. The building is specifically designed with common areas and features to allow individuals to “age in place”. Building features include private space and a safe, secure, barrier-free environment. Supportive living promotes residents’ independence and aging in place through the provision of services such as 24-hour monitoring, emergency response, security, meals, housekeeping, and life-enrichment activities. Publicly-funded personal care and health services are provided to supportive living residents based on their assessed unmet needs. (pg. 7). Designated Assisted Living (DAL) / Designated Supportive Living / Designated Supportive Housing: The term “designated’ refers to spaces within a supportive living facility where there is a contract between a regional health authority and a housing operator. Under the contract the facility operator provides health and support services based on assessed need. The regional health authority, in collaboration with the operator makes decisions regarding admission and discharge. Regional health authorities differ in terms of their target populations for these spaces, type and availability of health care staff, and the services that the operator must provide as part of the contract. (pg. 10). Facility Living: Includes “nursing” homes under the Nursing Homes Act and “auxiliary hospitals” under the Hospitals Act. Persons with complex and chronic health needs who require support and 24-hour registered nursing care are placed within these institutional settings. (pg. 10). Compared to supportive living (including DAL), facility living:

Cares for residents with medical conditions that may be serious, chronic and/or unpredictable and require access to registered nursing services on a 24-hour basis. These professionals are able to respond to the need for unscheduled assessments and prescribe interventions.

Provides 24-hour registered nursing care from nursing staff that are able to respond immediately and on a sustained and unscheduled basis.

Has specialized physical design and infrastructure to address highly complex needs.

Is governed by the Nursing Homes Act or the Hospitals Act. (pg. 4).

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APPENDIX 3 Table 3.1 Summary of Variables & Outcome Measures: Data Collection Techniques

Variable Data Source Linkage / Coding / Description Functional Status Cognitive Performance Scale (CPS) -CPS score range:0 (intact) to 6 (very severe

impairment) Activities of Daily Living (ADL) -ADL score range: 0 (independent) to 6 (total Hierarchy score dependence) Depression Rating Scale (DRS) measures developed & validated -DRS is comprised of 7 mood items (total score 14) based on subset of RAI items with cut-point of 3+ for mild-mod depression Health Related Quality of Life Health Status Index (HSI) -HSI, an observed health related quality of life measure

derived from RAI items mapped onto the Health Utilities Index Mark 2 (HUI2) classification system; provides an overall score & 6 constituent health attribute scores; score of 0.0=death to 1.0 (best possible health) with allowance for states worse than death; difference of 0.03 considered clinically important

Relocation to Higher Level of Care Admission to LTC facility or Regional Corporate Databases; -provincial health care number, surname, first name, Transfer to higher level of care Family Discharge Interviews sex & date of birth (identifying variables); higher (date, contributing factors, LOS) level of care may include relocation to a higher level care facility (lodge to enhanced lodge) or to unit in

same facility providing significantly greater care assistance

Hospitalization (date, most responsible Dxn & pre- Regional Corporate Databases; -provincial health care number – merging variable

adm Dxns contributing to LOS; Provincial Health Adm Databases -diagnoses coded with ICD-10CA LOS; ALC designation & LOS) (e.g., Discharge Abstract Database)

Other Health Service Use Emergency Room visits RAI items (e.g., P5-AL tool); -provincial health number – merging variable Physician visits Regional Corporate Databases -diagnoses coded with ICD-9-CM / ICD-10CA (date, #, relevant Dxns) Provincial Health Admin Databases Mortality, (date, primary/antecedent causes) -provincial personal health number, surname, first

Regional Corporate Databases; name, sex & date of birth – merging variables

Family Decedent Interviews -diagnoses coded with ICD-10CA Informal Care & Caregiver Burden (# hours of informal care provided RAI data items (e.g. P2,P6,O1g); -summary descriptive measures for type & amount and help with personal & Family Caregiver Interview of informal care provided to HC clients or residential instrumental activities of daily care residents living (ADL, IADL); relationship of caregiver to resident; caregiver -Caregiver Burden Scale; Caregiver Distress items burden & distress) on the RAI

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APPENDIX 4 Table 4.1 Baseline resident-level characteristics by outcome event during 1 year follow-up, ACCES-DAL Dementia Cohort (n=625).

Total Number

a

(% of total)

Outcomeb

Number (% of row total) p-value

LTCc

Death Still in DAL

Overall 625 156 (25.0) 79 (12.6) 380 (60.8) Age mean ±SD 85.2±6.7 85.8 (6.1) 87.4 (6.1) 84.4 (6.9) <0.001 65-74

75-84 85+

44 (7.0) 222 (35.5) 359 (57.4)

6 (13.6) 55 (24.8) 95 (26.5)

2 (4.6) 24 (10.8) 53 (14.8)

35 (79.6) 143 (64.4) 202 (56.3)

0.011

Sex Female Male

486 (77.8) 139 (22.2)

120 (24.7) 36 (25.9)

54 (11.1) 25 (18.0)

303 (62.4) 77 (55.4)

0.120

Marital Status 0.275 Widowed 457 (73.1) 118 (25.8) 57 (12.5) 274 (60.0) Married / Partner 97 (15.5) 22 (22.7) 18 (18.6) 56 (57.7) Never married / separated /

divorced 71 (11.4) 16 (22.5) 4 (5.6) 50 (70.4)

Strength of Social Relationshipsd

0.0002 Moderate/High (3-5) 493 (78.9) 106 (21.5) 58 (11.8) 321 (65.1) Low/None (0-2) 132 (21.1) 50 (37.9) 21 (15.9) 59 (44.7) Avg Time Involved in Activities

e 0.007

Most (>2/3 time) 76 (12.2) 12 (15.8) 7 (9.2) 55 (72.4) Some (1/3 to 2/3 time) 233 (37.3) 48 (20.6) 29 (12.5) 155 (66.5) Little-None (<1/3 time) 316 (50.6) 96 (30.4) 43 (13.6) 170 (53.8) Cognition (CPS Score) 0.0076 Intact-Borderline Intact (0,1) 97 (15.5) 14 (14.4) 11 (11.3) 70 (72.2) Mild Impairment (2) 229 (36.6) 48 (21.0) 27 (11.8) 151 (65.9) Mod-Severe-Very Severe

Impairment (3+) 299 (47.8) 94 (31.4) 41 (13.7) 159 (53.2)

Activities of Daily Living (ADL score) <0.0001 Independent (0) 199 (31.8) 31 (15.6) 14 (7.0) 151 (75.9) Supervision Required (1) 145 (23.2) 37 (25.5) 17 (11.7) 88 (60.7) Limited Impairment (2) 91 (14.6) 26 (28.6) 13 (14.3) 51 (56.0) Extensive Assistance

Req’d/Dependent (3+) 190 (30.4) 62 (32.6) 35 (18.4) 90 (47.4)

Health Instability (CHESS score)f

0.0002 Stable (0) 293 (46.8) 56 (19.1) 30 (10.2) 202 (68.9) Mild (1) 168 (26.9) 38 (22.6) 24 (14.3) 104 (61.9) Mild-Moderate (2) 111 (17.8) 37 (33.3) 17 (15.3) 55 (49.6) Moderate-High (3+) 53 (8.5) 25 (47.2) 8 (15.1) 19 (35.9) Primary Mode Locomotion 0.0001 Walks independently 184 (29.4) 37 (20.1) 10 (5.4) 134 (72.8) Walks - Assistive Device (1) 350 (56.0) 98 (28.0) 41 (11.7) 205 (58.6) Wheelchair/Scooter

g (2,3) 91 (14.6) 21 (23.1) 28 (30.8) 41 (45.1)

Falls CAP 0.0015 1+ Falls / 90 days 180 (28.8) 60 (33.3) 29 (16.1) 88 (48.9) None 445 (71.2) 96 (21.6) 50 (11.2) 292 (65.6) Bladder Incontinence 0.0008 Continent (0) 235 (37.6) 45 (19.2) 20 (8.5) 165 (70.2) Some control, infrequent

episodes(1,2) 85 (13.6) 16 (18.8) 16 (18.8) 52 (61.2)

Occasional incontinence (3) 63 (10.1) 15 (23.8) 5 (7.9) 42 (66.7) Frequent episodes, no control

(4+) 242 (38.7) 80 (33.1) 38 (15.7) 121 (50.0)

Bowel Incontinence 0.0003 Continent (0) 422 (67.5) 97 (23.0) 38 (9.0) 278 (65.9) Some control, infrequent

episodes (1,2) 100 (16.0) 25 (25.0) 18 (18.0) 56 (56.0)

Occasional incontinence (3) 59 (9.4) 21 (35.6) 10 (17.0) 28 (47.5) Frequent episodes, no control

(4+) 44 (7.0) 13 (29.6) 13 (29.6) 18 (40.9)

Depressive Symptoms (DRS Score) 0.006 Yes (3+) 145 (23.2) 51 (35.2) 20 (13.8) 73 (50.3) No (<3) 480 (76.8) 105 (21.9) 59 (12.3) 307 (64.0) Aggressive Behaviour (ABS Score)

h 0.012

None (0) 375 (60.0) 88 (23.5) 43 (11.5) 238 (63.5) Moderate (1-2) 129 (20.6) 32 (24.8) 18 (14.0) 75 (58.1)

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Total Number

a

(% of total)

Outcomeb

Number (% of row total) p-value

LTCc

Death Still in DAL

Severe (3-5) 92 (14.7) 20 (21.7) 16 (17.4) 56 (60.9) Very Severe (6+) 29 (4.6) 16 (55.2) 2 (6.9) 11 (37.9) Chronic Conditions mean ±SD 4.8±2.0 4.9 (2.2) 5.4 (2.0) 4.6 (1.9) 0.015 0-3 181 (29.0) 43 (23.8) 13 (7.2) 123 (68.0) 0.0612 4-5 229 (36.6) 59 (25.8) 28 (12.2) 137 (59.8) 6+ 215 (34.4) 54 (25.1) 38 (17.7) 120 (55.8) Previous Hospitalizations/ER Visits (past 90 days)

<0.0001

0 491 (78.6) 109 (22.2) 52 (10.6) 321 (65.4) 1+ 134 (21.4) 47 (35.1) 27 (20.2) 59 (44.0) Number of medications, mean ±SD 7.7 (3.6) 8.1 (3.6) 7.8 (3.8) 7.5 (3.5) 0.294 Use of dementia medications 0.138 None 360 (57.6) 88 (24.4) 55 (15.3) 212 (58.9) 1+ 265 (42.4) 68 (25.7) 24 (9.1) 168 (63.4)

ACCES=Alberta Continuing Care Epidemiological studies, DAL=designated assisted living, SD=standard deviation aSample excludes 2 residents with unknown outcome who discontinued study;

b10 (1.6%) residents with other outcomes (censored at date of first discharge from DAL) omitted from comparisons;

c28 residents who transferred to LTC subsequently died before end of follow-up (only included in LTC column);

dsocial relationships based on summary score of items assessing whether resident is close to someone in the facility, has a

strong/supportive relationship with family, participates in social activities of longstanding interest and visits/has other interactions with longstanding social relation/family member (in past week) eactivity involvement reflects when awake and not receiving treatments or ADL care;

f2 items (insufficient fluid, noticeable decline in food/fluid) used to calculate CHESS are not included on interRAI-AL tool

gincludes 1 resident who was bedbound;

hABS is a summary scale of 4 behaviours (verbal abuse, physical abuse, socially inappropriate or disruptive, resists care) with

higher scores indicating a greater number and frequency of behavioural issues; iEquivalent level of care (private AL, residential, respite (not in LTC), community support and transition beds); Lower level of care (independent living, lodge, condo); Higher level of care (LTC (including respite), acute care);

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Table 4.2 Baseline system/facility-level characteristics by outcome event during 1 year follow-up, ACCES-DAL Dementia Cohort (n=625).

Total Number

a

(% of total)

Outcomeb

Number (% of row total) p-value

LTCc

Death Still in DAL

Overall 625 156 (25.0) 79 (12.6) 380 (60.8) System / Facility Factors <0.0001 Region 1 166 (26.6) 51 (30.7) 9 (5.4) 104 (62.7) 2 139 (22.2) 14 (10.1) 38 (27.3) 86 (61.9) 3 78 (12.5) 30 (38.5) 8 (10.3) 36 (46.2) 4 184 (29.4) 43 (23.4) 17 (9.2) 121 (65.8) 5 58 (9.3) 18 (31.0) 7 (12.1) 33 (56.9) Ownership 0.0009 For-profit 238 (38.1) 66 (27.7) 14 (5.9) 153 (64.3) Not-for-profit/RHA 387 (61.9) 90 (23.3) 65 (16.8) 227 (58.7) Part of Chain 0.2331 No / RHA operated 71 (11.4) 20 (28.2) 13 (18.3) 36 (50.7) Yes – AL Chain 187 (29.9) 45 (24.1) 16 (8.6) 124 (66.3) Yes – AL/LTC Chain 367 (58.7) 91 (24.8) 50 (13.6) 220 (60.0) Year DAL Spaces Opened 0.2253 <2002 125 (20.0) 39 (31.2) 9 (7.2) 74 (59.2) 2002-03 210 (33.6) 50 (23.8) 26 (12.4) 132 (62.9) 2004+ 290 (46.4) 67 (23.1) 44 (15.2) 174 (60.0) #DAL Spaces 0.0011 <20 59 (9.4) 22 (37.3) 9 (15.3) 27 (45.8) 20-29 103 (16.5) 38 (36.9) 6 (5.8) 56 (54.4) 30-39 150 (24.0) 40 (26.7) 16 (10.7) 92 (61.3) 40+ 313 (50.1) 56 (17.9) 48 (15.3) 205 (65.5) #Total Spaces <55 93 (14.9) 31 (33.3) 10 (10.8) 51 (54.8) 0.0507 55-89 151 (24.2) 31 (20.5) 30 (19.9) 88 (58.3) 90-147 140 (22.4) 40 (28.6) 13 (9.3) 86 (61.4) 148+ 241 (38.6) 54 (22.4) 26 (10.8) 155 (64.3) Levels of Care on Site

i 0.3793

DAL only / DAL+ Equivalent/Lower

519 (83.0) 129 (24.9) 70 (13.5) 313 (60.3)

DAL + Higher Level 106 (17.0) 27 (25.5) 9 (8.5) 67 (63.2) LTC Beds On Site 0.2726 No 521 (83.4) 129 (24.8) 71 (13.6) 314 (60.3) Yes (LTC/LTC-dem) 104 (16.6) 27 (26.0) 8 (7.7) 66 (63.5) LPN/RN Coverage on Site 0.1362 Neither on site 160 (25.6) 52 (32.5) 21 (13.1) 84 (52.5) LPN &/or RN <24/7 71 (11.4) 17 (23.9) 5 (7.0) 48 (67.6) LPN &/or RN 24/7 394 (63.0) 87 (22.1) 53 (13.5) 248 (62.9) Physician (GP) Affiliated with Site 0.2943 No 417 (66.7) 103 (24.7) 57 (13.7) 253 (60.7) Yes, office on site 99 (15.8) 22 (22.2) 9 (9.1) 66 (66.7) Yes, no office on site 109 (17.4) 31 (28.4) 13 (11.9) 61 (56.0) Psychiatrist/Clinical Psychologist involved in facility/past month

0.0568

No 424 (67.8) 107 (25.2) 63 (14.9) 246 (58.0) Yes 201 (32.2) 49 (24.4) 16 (8.0) 134 (66.7) Community Size 0.0019 <10,000 125 (20.0) 30 (24.0) 24 (19.2) 69 (55.2) 10,000-99,999 169 (27.0) 39 (23.1) 32 (18.9) 95 (56.2) 1 million+ 331 (53.0) 87 (26.3) 23 (7.0) 216 (65.3)

ACCES=Alberta Continuing Care Epidemiological studies, DAL=designated assisted living, SD=standard deviation aSample excludes 2 residents with unknown outcome who discontinued study;

b10 (1.6%) residents with other outcomes (censored at date of first discharge from DAL) omitted from comparisons;

c28 residents who transferred to LTC subsequently died before end of follow-up (only included in LTC column);

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Table 4.3 Estimated Hazard Ratios (95% CIs) for LTC placement during 1 year follow-up, ACCES-DAL Dementia Cohort (n=625).

Baseline Characteristic

Age/Sex Adjusted HR (95% CI)

a Adjusted HR

(95% CI)b

Age, 65-74= ref 75-84 1.96 (0.85-4.53) 1.90 (0.79-4.57) 85+ 2.20 (0.96-5.07)

c 1.84 (0.76-4.47)

Female 0.90 (0.66-1.23) 0.79 (0.56-1.12) Strength of Social Relationships, mod/high = ref

Low/None 2.05 (1.40-3.00) 1.85 (1.22-2.79) Avg Time Involved in Activities, most = ref

Some (1/3 to 2/3 time) 1.32 (0.65-2.68) 1.22 (0.56-2.66) Little-None (<1/3 time) 2.19 (1.11-4.32) 2.02 (0.92-4.42)

c

Cognition (CPS Score), intact-borderline intact=ref Mild Impairment (2) 1.44 (0.79-2.62) -- Mod-Very Severe Impairment (3+) 2.43 (1.30-4.57) -- Activities of Daily Living (ADL score), indep = ref Supervision Required (1) 1.74 (1.12-2.72) 1.64 (1.01-2.67) Limited Impairment (2) 2.03 (1.25-3.31) 1.66 (0.93-2.96)

c

Extensive Assistance Req’d/Dependent (3+) 2.59 (1.65-4.06) 1.72 (1.04-2.85) Health Instability (CHESS score), stable = ref Mild (1) 1.28 (0.82-1.98) 1.21 (0.79-1.84) Mild-Moderate (2) 2.04 (1.32-3.16) 1.16 (0.70-1.91) Moderate-High (3+) 3.46 (2.18-5.48) 1.94 (1.23-3.06) Primary Mode Locomotion, walks independently = ref Walks with Assistive Device (1) 1.45 (1.11-1.90) -- Wheelchair/Scooter (2,3) 1.47 (0.83-2.61) -- Falls, 1+ past 90 days 1.80 (1.33-2.43) -- Bladder Incontinence, continent-occasional incont = ref Frequent episodes, no control 2.04 (1.53-2.72) 1.90 (1.37-2.64) Depressive Symptoms (DRS Score 3+) 1.79 (1.26-2.55) -- Aggressive Behaviour (ABS Score), none = ref Moderate (1-2) 1.12 (0.73-1.70) 1.07 (0.70-1.65) Severe (3-5) 0.98 (0.61-1.59) 0.69 (0.43-1.11) Very Severe (6+) 3.12 (1.78-5.48) 1.96 (0.91-4.24)

c

Previous Hospitalizations/ER Visits, 1+ past 90 days 1.89 (1.39-2.57) 1.55 (1.06-2.27) Number of Drugs (continuous) 1.05 (1.01-1.10) 1.05 (1.00-1.11)

c

Region, 1 (urban) = ref 2 (urban – rural) 0.29 (0.16-0.52) 0.14 (0.08-0.27) 3 (rural) 1.46 (1.02-2.09) 0.73 (0.43-1.25) 4 (urban) 0.80 (0.53-1.20) 0.47 (0.30-0.74) 5 (rural) 1.13 (0.79-1.62) 0.56 (0.34-0.90)

ACCES=Alberta Continuing Care Epidemiological studies, DAL=designated assisted living, CI=confidence interval a Derived from age/sex adjusted Cox proportional hazards regression models, also adjusted for clustering by facility; sample

excludes 2 residents with unknown outcome who discontinued study; b Derived from multivariable Cox proportional hazards regression models (adjusted for all variables retained above), also adjusted

for clustering by facility; sample excludes 2 residents with unknown outcome who discontinued study; c p<0.10

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Alberta Addiction & Mental Health Research Partnership Program 38

Table 4.4 Adjusted hazard ratios (95% CIs) for LTC placement during 1 year follow-up associated with selected facility factors, ACCES-DAL Dementia Cohort (n=625).

Adjusted HR (95% CI)

Outcome

LTCa

Model A #DAL Spaces <20, ref group - - 20-29 0.86 (0.52-1.44) 30-39 0.62 (0.39-0.98) 40+ 0.44 (0.26-0.76) Model B #Total Spaces <55, ref group - - 55-89 0.51 (0.31-0.86) 90-147 0.98 (0.69-1.40) 148+ 0.61 (0.40-0.93) Model C LPN/RN Coverage on Site Neither on site 1.56 (0.82-2.97) LPN &/or RN <24/7 1.40 (0.84-2.33) LPN &/or RN 24/7, ref gp - - Model D Physician (GP) Affiliated with Site No, ref group - - Yes, with office on site 0.65 (0.35-1.19) Yes, no office on site 0.80 (0.59-1.07) Model E Psychiatrist/Clinical Psychologist involved in facility/past month

No - Yes 0.74 (0.50-1.11)

ACCES=Alberta Continuing Care Epidemiological studies, DAL=designated assisted living, CI=confidence interval aModels A-E derived from multivariable Cox proportional hazards regression models (adjusted for all characteristics listed in Table

4.2.3), also adjusted for clustering by facility; sample excludes 2 residents with unknown outcome who discontinued the study.

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APPENDIX 5 Table 5.1 Baseline characteristics of DAL (n=609) and LTC (n=691) residents with dementia

DAL*

(% of total) LTC

(% of total) p-value

n=609 n=691

Sociodemographic & Social Wellbeing Age mean ±SD 85.7±6.6 86.4±6.9 0.0640 65-79

80-85 86-89 90+

123 (20.2) 177 (29.1) 144 (23.7) 165 (27.1)

122 (17.7) 183 (26.5) 172 (24.9) 214 (31.0)

0.2882

Sex Female Male

475 (78.0) 134 (22.0)

464 (67.2) 227 (32.9)

<0.0001

Marital Status <0.0001 Widowed 446 (73.2) 426 (61.7) Married / Partner 95 (15.6) 174 (25.2) Never married / separated / divorced 68 (11.2) 91 (13.2) Strength of Social Relationships

‡ <0.0001

Moderate/High (3-5) 484 (79.5) 427 (61.8) Low/None (0-2) 125 (20.5) 264 (38.2) Avg Time Involved in Activities

§ <0.0001

Most (>2/3 time) 76 (12.5) 47 (6.8) Some (1/3 to 2/3 time) 229 (37.6) 205 (29.7) Little-None (<1/3 time) 304 (49.9) 439 (63.5) Health & Functional Status Cognition (CPS Score) <0.0001 Intact (0) 34 (5.6) 2 (0.3) Borderline Intact (1) 63 (10.3) 27 (3.9) Mild Impairment (2) 227 (37.3) 154 (22.3) Mod-Severe-Very Severe Impairment

(3+) 285 (46.8) 507 (73.4)

Activities of Daily Living (ADL score) <0.0001 Independent (0) 198 (32.5) 20 (2.9) Supervision Required (1) 143 (23.5) 35 (5.1) Limited Impairment (2) 84 (13.8) 53 (7.7) Extensive Assistance Req’d/Dependent

(3+) 184 (30.2) 583 (84.4)

Health Instability (CHESS score)¶

0.0034 Stable (0) 289 (47.5) 268 (38.8) Mild (1) 162 (26.6) 232 (33.6) Mild-Moderate (2) 108 (17.7) 145 (21.0) Moderate-High (3+) 50 (8.2) 46 (6.7) Fatigue, <3 days <0.0001 None 278 (45.7) 278 (40.2) Minimal 236 (38.8) 217 (31.4) Moderate-Severe 95 (15.6) 196 (28.4) Primary Mode Locomotion <0.0001 Walks independently 182 (29.9) 83 (12.0) Walks with Assistive Device 337 (55.3) 151 (21.9) Wheelchair/Scooter

** 90 (14.8) 457 (66.1)

Falls CAP 0.6827 1+ Falls / 90 days 177 (29.1) 208 (30.1) None 432 (70.9) 483 (69.9) Depressive Symptoms (DRS Score) <0.0001 Yes (3+) 140 (23.0) 364 (52.7) No (<3) 469 (77.0) 324 (46.9) Aggressive Behaviour (ABS Score)

†† <0.0001

None (0) 370 (60.8) 186 (26.9) Moderate (1-2) 121 (19.9) 144 (20.8) Severe (3-5) 90 (14.8) 171 (24.8) Very Severe (6+) 28 (4.6) 190 (27.5) # Chronic Conditions mean ±SD 4.8±2.0 5.4±2.1 <0.0001 0-3 173 (28.4) 130 (18.8) <0.0001 4-5 223 (36.6) 255 (36.9) 6+ 213 (35.0) 306 (44.3) # Medications mean ±SD 7.7±3.6 7.4±3.5 0.1656

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DAL*

(% of total) LTC

(% of total) p-value

n=609 n=691

0-6 241 (39.6) 282 (40.8) 0.9239 7-8 139 (22.8) 148 (21.4) 9-10 115 (18.9) 134 (19.4) 11+ 114 (18.7) 127 (18.4) Adv Directive – Do Not Hospitalize <0.0001 Yes 63 (10.3) 225 (32.6) No 546 (89.7) 466 (67.4) Previous Inpatient Hospitalizations (prior year) 0.0001 0 413 (67.8) 540 (78.2) 1 138 (22.7) 106 (15.3) 2+ 58 (9.5) 45 (6.5) Bladder Incontinence <0.0001 Continent 231 (37.9) 47 (6.8) Some control, infrequent episodes 83 (13.6) 66 (9.6) Occasional incontinence 60 (9.9) 64 (9.3) Frequent episodes, no control 235 (38.6) 514 (74.4) Bowel Incontinence <0.0001 Continent 412 (67.7) 177 (25.6) Some control, infrequent episodes 99 (16.3) 117 (16.9) Occasional incontinence 56 (9.2) 104 (15.1) Frequent episodes, no control 42 (6.9) 293 (42.4) System / Facility Factors Region 1 (urban) 166 (27.3) 214 (31.0) 0.1831 2 (mixed urban/rural) 135 (22.2) 138 (20.0) 3 (rural) 77 (12.6) 103 (14.9) 4 (urban) 174 (28.6) 166 (24.0) 5 (rural) 57 (9.4) 70 (10.1) Ownership 0.0001 For-profit 233 (38.3) 195 (28.2) Not-for-profit/RHA 376 (61.7) 496 (71.8) Part of Chain <0.0001 No / RHA operated 70 (11.5) 229 (33.1) Yes – AL (LTC) Chain only 181 (29.7) 228 (33.0) Yes – AL & LTC Chain 358 (58.8) 234 (33.9) Year DAL (LTC) Spaces Opened

‡‡ <0.0001

<2002 124 (20.4) 606 (87.7) 2002-03 203 (33.3) 28 (4.1) 2004+ 282 (46.3) 13 (1.9) #DAL (LTC) Spaces <0.0001 mean ±SD 46±27 134±113 median 39 100 IQR 26-60 56-188 #Total Spaces 0.0681 mean±SD 142±115 154±121 median 124 119 IQR 62-154 83-202 Levels of Care on Site

§§ 0.3662

DAL (LTC) only / DAL (LTC) + Equivalent/Lower

507 (83.3) 562 (81.3)

DAL (LTC) + Higher Level 102 (16.8) 129 (18.7) LPN/RN Coverage on Site Neither on site 158 (25.9) LPN &/or RN <24/7 63 (10.3) LPN &/or RN 24/7 388 (63.7) 691 (100.0) Physician (GP) Affiliated with Site <0.0001 No 408 (67.0) 10 (1.5) Yes, office on site 95 (15.6) 189 (27.4) Yes, no office on site 106 (17.4) 492 (71.2) Community Size <0.0001 <10,000 122 (20.0) 224 (32.4) 10,000-99,999 166 (27.3) 141 (20.4) 1 million+ 321 (52.7) 326 (47.2)

DAL=designated assisted living; LTC=long-term care; SD=standard deviation.

‡ Social relationships based on summary score of items assessing whether resident is close to someone in the facility, has a

strong/supportive relationship with family, participates in social activities of longstanding interest and visits/has other interactions with longstanding social relation/family member (in past week). § Activity involvement reflects when awake and not receiving treatments or ADL care.

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Alberta Addiction & Mental Health Research Partnership Program 41

¶ 2 items (insufficient fluid, noticeable decline in food/fluid) used to calculate CHESS are not included on interRAI-AL tool.

** Includes 1 DAL resident and 6 LTC residents who were bedbound. ††

ABS is a summary scale of 4 behaviours (verbal abuse, physical abuse, socially inappropriate or disruptive, resists care) with higher scores indicating a greater number and frequency of behavioural issues. ‡‡

For LTC, 44 residents have missing value for year LTC facility opened. §§

For DAL facilities: Equivalent level of care (private AL, residential, respite [not in LTC], community support & transition beds); Lower level of care (independent living, lodge, condo); Higher level of care (LTC [including respite], acute care); For LTC facilities: Equivalent level of care (other LTC bed types); Lower level of care (DAL, private AL, residential, respite [not in LTC], community support & transition beds, independent living, lodge, condo); Higher level of care (acute care).

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Table 5.2 Most common causes for hospitalization* among DAL (n=609) and LTC (n=691) residents with dementia

Category (Most Responsible Diagnosis)

DAL

LTC

# % all

hospitalizations

(n=220)

% of

residents

(n=609)

# % all

hospitalizations

(n=74)

% of

residents

(n=691)

Injuries

Hip Fractures

Other Fractures

Traum Brain Inj (e.g., SDH)

Other Injuries

Total

17

10

2

4

33

15.0%

5.4%

8

5

1

1

15

20.3%

2.2%

Infectious Diseases

Pneumonia

Urinary

Other

Total

16

11

6

33

15.0%

5.4%

13

5

5

23

31.1%

3.3%

Cardiovascular

Congestive Heart Failure

Ischemic Heart Disease

Stroke

Peripheral Artery Disease

Other

Total

12

10

8

0

0

30

13.6%

4.9%

4

2

0

1

2

9

12.2%

1.3%

Gastrointestinal

GI bleed

Other

Total

4

15

19

8.6%

3.1%

0

6

6

8.1%

0.9%

Provision of Care

Palliative

Rehabilitation

Convalescence

Waiting transfer

Other

Total

6

6

4

2

1

19

8.6%

3.1%

1

0

2

0

0

3

4.1%

0.4%

Cognitive Disorder

Dementia

Delirium

Other

Total

17

1

0

18

8.2%

3.0%

0

1

1

2

2.7%

0.3%

Respiratory

COPD

Other

Total

5

5

10

4.5%

1.6%

4

0

4

5.4%

0.6%

Musculoskeletal 7 3.2% 1.1% 1 1.4% 0.1%

Neoplasms 6 2.7% 1.0% 2 2.7% 0.3%

Endocrine

Diabetes mellitus

Other

Total

4

1

5

2.3%

0.8%

0

1

1

1.4%

0.1%

Other

Fluid / electrolytes

6

1

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Alberta Addiction & Mental Health Research Partnership Program 43

Cachexia

Anemia

Falls (without fracture)

Neurological

Acute renal failure

Genitourinary

Psychiatry

Seizure / epilepsy

Syncope

Miscellaneous

Total

5

4

4

3

2

2

2

2

2

8

40

18.2%

6.6%

1

0

0

2

0

1

0

0

0

3

8

10.8%

1.2%

* derived from ICD10CA codes listed for the most responsible discharge diagnosis

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Table 5.3 Adjusted hazard ratios* (95% CIs) for hospitalization during 1 year follow-up, ACCES-

DAL Dementia Cohort (n=609). HR (95% CIs)

Age-Adjusted

Fully Adjusted – 1†

Fully Adjusted – 2‡

Age 65-79, ref gp 80-85 1.23 (0.81-1.88) 1.22 (0.80-1.86) 86-89 1.07 (0.68-1.66) 1.05 (0.67-1.64) 90+ 1.39 (1.02-1.90) 1.39 (1.02-1.89)

Female 0.75 (0.56-1.00) 0.83 (0.59-1.16) 0.84 (0.60-1.19) Strength of Social Relationships

Moderate/High, ref gp Low/None 1.43 (1.13-1.79) 1.38 (1.06-1.81)

1.38 (1.06-1.81)

Cognition (CPS score) Intact (0), ref gp Borderline Intact (1) 0.44 (0.23-0.87) 0.35 (0.18-0.67) 0.35 (0.18-0.67) Mild Impairment (2) 0.76 (0.46-1.27) 0.57 (0.35-0.93) 0.56 (0.34-0.93) Mod-Severe-Very Severe

Impairment (3+) 0.72 (0.43-1.19) 0.54 (0.33-0.89) 0.53 (0.32-0.88)

Activities of Daily Living (ADL score) Independent (0), ref gp Supervision Required (1) 1.05 (0.72-1.52) - - Limited Impairment (2) 1.00 (0.62-1.62) - - Extensive Assistance

Req’d/Dependent (3+) 1.54 (1.12-2.10) - -

Health Instability (CHESS score) Stable (0), ref gp Mild (1) 1.51 (1.13-2.01) 1.28 (0.97-1.70)

§ 1.30 (0.99-1.71)

§

Mild-Moderate (2) 1.41 (0.97-2.05)§

1.11 (0.77-1.61) 1.13 (0.79-1.63) Moderate-High (3+) 2.45 (1.38-4.35) 1.34 (0.67-2.71) 1.32 (0.67-2.59) Fatigue, <3 days None (0), ref gp Minimal (1) 1.40 (1.02-1.90) 1.28 (0.91-1.82) 1.35 (0.98-1.86)

§

Moderate-Severe (2+) 1.99 (1.34-2.96) 1.65 (1.03-2.63) 1.74 (1.12-2.69) Primary Mode Locomotion Walks independently, ref gp Walks with device 1.55 (1.09-2.20) - - Wheelchair / Scooter 2.01 (1.25-3.23) - - Falls CAP 1+ Falls / 90 days 1.58 (1.24-2.01) - - # Chronic Conditions 0-3, ref gp 4-5 1.30 (0.92-1.82) 1.07 (0.71-1.62) - 6+ 1.89 (1.40-2.56) 1.30 (0.84-2.00) - # Medications 0-6, ref gp 7-8 1.41 (1.01-1.97) 1.28 (0.92-1.78)

1.35 (0.98-1.86)

§

9-10 1.52 (1.03-2.24) 1.27 (0.81-2.00)

1.38 (0.94-2.03)§

11+ 2.14 (1.51-3.02) 1.57 (1.05-2.34) 1.72 (1.14-2.59) Previous Inpatient Hospitalizations <1 yr 0, ref gp 1 1.30 (0.95-1.79)

§ 1.09 (0.78-1.53) 1.10 (0.80-1.53)

2+ 2.74 (1.95-3.86) 2.28 (1.52-3.42) 2.31 (1.54-3.47) Bowel Incontinence Any incontinence 1.55 (1.18-2.02) 1.35 (1.00-1.82)

§ 1.34 (0.99-1.81)

§

System / Facility Factors Region 1 (urban), ref gp 2 (mixed urban/rural) 1.32 (0.86-2.02) 0.84 (0.55-1.26) 0.88 (0.59-1.31) 3 (rural) 2.51 (1.55-4.08) 1.90 (1.10-3.30) 2.01 (1.20-3.38) 4 (urban) 1.15 (0.73-1.81) 1.02 (0.67-1.55) 1.03 (0.69-1.53) 5 (rural) 1.83 (1.02-3.28) 1.61 (0.93-2.80)

§ 1.62 (0.95-2.76)

§

Community Size <10,000, ref gp 10,000 – 99,999 0.86 (0.58-1.26)

- -

1 million+ 0.51 (0.35-0.75) - -

Abbreviations: ACCES=Alberta Continuing Care Epidemiological Studies; DAL=designated assisted living; CI=confidence interval. * Derived from Cox proportional hazards regression models (first event analysis), also adjusted for clustering by facility.

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† Model 1 including # chronic conditions;

‡ Model 2 excluding # chronic conditions.

§ p<.10

Table 5.4 Adjusted hazard ratios* (95% CIs) for hospitalization during 1 year follow-up associated

with selected facility factors, ACCES-DAL Dementia Cohort (n=609). Adjusted HR (95% CI)

Model A†

#DAL Spaces <20 1.62 (1.02-2.56) 20-29 0.94 (0.58-1.55) 30-39 1.02 (0.69-1.49) 40+, ref group - Model B

Part of Chain No / RHA operated 1.63 (0.93-2.83)

§

Yes – AL Chain 1.24 (0.94-1.64) Yes – AL/LTC Chain, ref gp -

Abbreviations: ACCES=Alberta Continuing Care Epidemiological Studies; DAL=designated assisted living; CI=confidence interval. * Derived from Cox proportional hazards regression models (first event analysis), also adjusted for clustering by facility. † Models A,B are adjusted for age, sex, strength of social relationships, cognition, health instability, fatigue, comorbidity, # medications, previous hospitalizations, bowel incontinence, and region.