Dementia Care and Quality of Life in Assisted Living

148 Pages·2005·1.25 MB·English

Dementia Care and Quality of Life
in Assisted Living and Nursing Homes
Richard Schulz, PhD, Guest Editor
STAFF FOR THIS ISSUE
Richard Schulz, PhD, Guest Editor
Elizabeth Heck, MSW, LCSW, Philip D. Sloane, MD, MPH,
and Sheryl Zimmerman, PhD, Issue Co-Editors
Katie Maslow, MSW, Alzheimer’s Association
Patty Walker, Publications Director, GSA
Erin Piel, Production Editor, GSA
Susan Sweeney, Associate Production Editor, GSA
ACKNOWLEDGMENTS
This special issue of The Gerontologist is sponsored through a generous grant from the
Alzheimer’s Association. Recognition and thanks are sent to the staff, residents, and families
participating in the Collaborative Studies of Long-Term Care (CS-LTC) and to all of those
who devote their efforts to the quality of life and quality of care in assisted living and
nursing homes.
We thank the following individuals for their participation in the liaison panel and their
contributions to the study: Peggy Bargmann, Cornelia Beck, Carolyn Cunningham, Scott
Gardner, Becky Groff, Jan McGillick, Clarissa Rentz, Linda Sabo, and Jan Weaver.
Printed in the U.S.A.
Contents
Introduction: Dementia Care and Quality of Life in Assisted Living and Nursing Homes
Sheryl Zimmerman, Philip D. Sloane, Elizabeth Heck, Katie Maslow, and Richard Schulz . . . . . . . . . . . . . . . . . . 5
Dementia Care and Quality of Life in Assisted Living and Nursing Homes: Perspectives of the
Alzheimer’s Association
Katie Maslow and Elizabeth Heck . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
CONCEPTUALIZATION, MEASUREMENT, AND CORRELATES OF RESIDENT QUALITY OF LIFE
Dementia Care Mapping: A Review of the Research Literature
Dawn Brooker . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11
The Association of Neuropsychiatric Symptoms and Environment With Quality of Life in Assisted Living
Residents With Dementia
Quincy M. Samus, Adam Rosenblatt, Cynthia Steele, Alva Baker, Michael Harper, Jason Brandt,
Lawrence Mayer, Peter V. Rabins, and Constantine G. Lyketsos . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .19
A Comparison of Three Methods of Measuring Dementia-Specific Quality of Life: Perspectives of Residents,
Staff, and Observers
Perry Edelman, Bradley R. Fulton, Daniel Kuhn, and Chih-Hung Chang . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27
Evaluating the Quality of Life of Long-Term Care Residents With Dementia
Philip D. Sloane, Sheryl Zimmerman, Christianna S. Williams, Peter S. Reed, Karminder S. Gill,
and John S. Preisser . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .37
BRIEF REPORTS: DISCRETE DOMAINS OF QUALITY OF LIFE
Characteristics Associated With Depression in Long-Term Care Residents With Dementia
Ann L. Gruber-Baldini, Sheryl Zimmerman, Malaz Boustani, Lea C. Watson, Christianna S. Williams,
and Peter S. Reed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .50
Characteristics Associated With Behavioral Symptoms Related to Dementia in Long-Term Care Residents
Malaz Boustani, Sheryl Zimmerman, Christianna S. Williams, Ann L. Gruber-Baldini, Lea Watson,
Peter S. Reed, and Philip D. Sloane . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .56
Characteristics Associated With Mobility Limitation in Long-Term Care Residents With Dementia
Sharon Wallace Williams, Christianna S. Williams, Sheryl Zimmerman, Philip D. Sloane,
John S. Preisser, Malaz Boustani, and Peter S. Reed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62
Characteristics Associated With Pain in Long-Term Care Residents With Dementia
Christianna S. Williams, Sheryl Zimmerman, Philip D. Sloane, and Peter S. Reed . . . . . . . . . . . . . . . . . . . . . . . . .68
Characteristics Associated With Low Food and Fluid Intake in Long-Term Care Residents With Dementia
Peter S. Reed, Sheryl Zimmerman, Philip D. Sloane, Christianna S. Williams, and Malaz Boustani . . . . . . . . . . .74
Characteristics Associated With Lower Activity Involvement in Long-Term Care Residents With Dementia
Debra Dobbs, Jean Munn, Sheryl Zimmerman, Malaz Boustani, Christianna S. Williams, Philip D. Sloane,
and Peter S. Reed. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .81
SPECIAL TOPICS RELATED TO QUALITY OF LIFE AND QUALITY OF CARE
Families Fillng the Gap: Comparing Family Involvement for Assisted Living and Nursing Home Residents
With Dementia
Cynthia L. Port, Sheryl Zimmerman, Christianna S. Williams, Debra Dobbs, John S. Preisser, and
Sharon Wallace Williams . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .87
Attitudes, Stress, and Satisfaction of Staff Who Care for Residents With Dementia
Sheryl Zimmerman, Christianna S. Williams, Peter S. Reed, Malaz Boustani, John S. Preisser,
Elizabeth Heck, and Philip D. Sloane . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .96
Factors Associated With Nursing Assistant Quality-of-Life Ratings for Residents With Dementia in Long-Term
Care Facilities
Gary S. Winzelberg, Christianna S. Williams, John S. Preisser, Sheryl Zimmerman, and Philip D. Sloane . . . . 106
Sociocultural Aspects of Transitions From Assisted Living for Residents With Dementia
Louise Crawford Mead, J. Kevin Eckert, Sheryl Zimmerman, and John G. Schumacher . . . . . . . . . . . . . . . . . . 115
THE RELATIONSHIP OF CARE TO QUALITY OF LIFE AND OUTCOMES
Health and Functional Outcomes and Health Care Utilization of Persons With Dementia in Residential Care
and Assisted Living Facilities: Comparison With Nursing Homes
Philip D. Sloane, Sheryl Zimmerman, Ann L. Gruber-Baldini, J. Richard Hebel, Jay Magaziner,
and Thomas R. Konrad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 124
Dementia Care and Quality of Life in Assisted Living and Nursing Homes
Sheryl Zimmerman, Philip D. Sloane, Christianna S. Williams, Peter S. Reed, John S. Preisser,
J. Kevin Eckert, Malaz Boustani, and Debra Dobbs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133
Instructions to Authors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147
Cover Photograph—Aaron Itkin looks back on a fulfilling life—Janice, his bride of 56 years;
12 healthy, happy grandchildren; a successful career in the Chicago commodity exchange—and
looks forward with enduring hope that the Cubs will one day win the World Series.
Copyright Ó 2005 by Philip D. Sloane
The Geronotologist is included in the following indexing services: Index Medicus, MEDLINE,
PUBMED, Current Contents, and Social Index.
The Gerontologist Copyright 2005 by The Gerontological Society of America
Vol. 45, Special Issue I, 5–7
Introduction: Dementia Care and Quality of
Life in Assisted Living and Nursing Homes
1,2 1,3
Sheryl Zimmerman, PhD, Philip D. Sloane, MD, MPH,
4 5 6
Elizabeth Heck, MSW, LCSW, Katie Maslow, MSW, and Richard Schulz, PhD
It is well recognized that the number of older Bloom-Charette, 1999). Efforts to define and mea-
adults who suffer from dementia has been increasing sure this multidimensional component have pro-
and will continue to do so over the coming years. In gressed as well, and there now exist numerous valid
fact, nothing short of a three-fold rise in the number and reliable instruments to do so (see, for example,
of people with Alzheimer’s disease is expected to Albert & Logsdon, 2000). What has been absent
occur between 2000 and 2050, and those with from the field is the study of quality of life for
moderate or severe disease may number as many as individuals with dementia in long-term care set-
6.5 million midway through the century (Sloane tings—both nursing homes and RC/AL facilities.
et al., 2002). As the severity of dementia increases, Without this information, it has not been possible to
families face challenging caregiving demands, and evaluate components of care that relate to better
many find residential long-term care to be the best quality of life. In this context, the work conducted by
option for ongoing oversight. Historically, nursing the Collaborative Studies of Long-Term Care (CS-
homes have been the primary setting for the LTC) constitutes a significant contribution to what is
institutional care of older adults. During the last known about quality of life and its correlates in
decade, however, their prominence in providing care long-term care. Another contribution of the work
for individuals who do not need medical services has conducted by the CS-LTC is its basis in community-
been challenged by the growth of residential care/ based participatory research, which maximizes its
assisted living (RC/AL)—facilities or discrete por- utility for practice and policy. As detailed in the
tions of facilities that are licensed by the states at following ‘‘Perspectives of the Alzheimer’s Associa-
a nonnursing home level of care, and provide room, tion,’’ the Association is using this information as
board, 24-hour oversight, and assistance with the basis for its evidence-based consumer education,
activities of daily living. Recent estimates indicate advocacy, and staff training efforts. Thus, the work
that 23% to 42% of RC/AL residents have moderate presented in this issue is a necessary step toward the
or severe dementia, as do more than 50% of nursing improvement of care and the quality of life for
home residents (Zimmerman et al., 2003). The persons with dementia.
number of RC/AL and nursing home beds exceeds
800,000 and 1.8 million, respectively (Institute on
Medicine, 2001), suggesting that well more than 1 The Collaborative Studies of Long-Term Care
million individuals with dementia already reside in The CS-LTC, initiated in 1997, is a series of
these settings. multistate projects that have studied almost 5,000
The matter of ‘‘quality’’ of life for individuals residents in more than 350 RC/AL facilities and
with dementia has been increasingly recognized nursing homes, with the goal of better understanding
during the last decade, and countless textbooks and issues related to quality of life and quality of care.
manuals have been written to provide guidance on The CS-LTC was initiated in response to the
enhancing quality of life (see, for example, Fazio, proliferation of RC/AL facilities, to address the
Seman, & Stansell, 1999; Kovach, 1996; Volicer & paucity of information regarding the needs of their
residents and the care that they receive, especially in
1Cecil G. Sheps Center for Health Services Research, University of light of the great diversity among these facilities. A
Nor2
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Pittsburgh, PA. one of the CS-LTC projects, which collected data
Vol. 45, Special Issue No. I, 2005 5
from 421 residents in 45 facilities across Florida, Data collection from residents and staff was
Maryland, New Jersey, and North Carolina between conducted on-site, and family members were con-
2001 and 2003. These four states were selected tacted by telephone. Interviews were conducted with
because they exhibit differences in the structure and each resident; his or her familymember; the direct care
financing of RC/AL and nursing home care. A provider who provided the most hands-on care and
multilevel sampling frame was used to select facilities knew themost about the resident’s care, health,mood,
and residents for participation. Within each state, and daily activities; the supervisor (the staff member
a region of contiguous counties was identified that above the direct care provider level who knew the
represent the state, and a sampling frame was most about the resident); and the facility administra-
constructed consisting of all nursing homes and tor (to obtain facility-level data). Additionally, data
licensed facilities within each region. RC/AL facil- collectors observed residents during one meal, and
ities were stratified into three types to assure during the course of a single day at 5-min intervals
inclusion of the broad range of options: (a) facilities during three 1-hr observation periods; also, the
with , 16 beds; (b) facilities with 16 beds of the physical environment of each facility was observed.
‘‘new-model’’ type that offer add-on services, cater The design of the Dementia Care project allowed
to a more impaired population, and/or provide a comparatively modest number of residents and
nursing care; and (c) ‘‘traditional’’ facilities with facilities to be sampled; consequently, the study’s
16 beds, not meeting new-model criteria. Sampling power to detect some associations is limited.
all three types of facilities assured broad represen- However, the sample included facilities with large
tation of facilities and variability in resident case- proportions of residents with dementia (the average
mix, policy, and care provision. reported percent of residents with a diagnosis of
The Dementia Care project was based on a purpo- dementia was 55% to 57%) and a relatively high
sive stratified sample of 45 facilities, 33 of which were proportion of facilities with Alzheimer’s special care
already participating in the CS-LTC and were known units (54%). Thus, while findings related to the
to have variability in some components of dementia prevalence of resident and facility characteristics are
care (e.g., acceptance of behavioral symptoms). The not meant to be generalizable to all facilities or
Alzheimer’s Association identified an additional 12 nursing homes, the study may well represent de-
facilities that incorporated features of particular mentia care as it is currently being practiced. Further,
interest (e.g., did or did not have responsive owners, although the number of facilities and residents
a special care unit, individualized care, daily pro- sampled was necessarily limited, the patterns of
gramming, staff training, and/or select environmental associations found in this study are not expected to
features). Within facilities, the primary criteria for differ dramatically in other facilities.
selecting resident study participants were being aged
65 or older and having a diagnosis of dementia; for
Organization of the Special Issue
purposes of efficiency, facilities with fewer than 2
eligible residents (in facilities with fewer than 16 beds) This special issue includes 16 manuscripts,
or 13 eligible residents (in all other facilities) were grouped within four headings. Not all are derived
excluded from the study. Eligible facilities were from the CS-LTC Dementia Care study. The first
enrolled in a manner that maintained stratification four manuscripts address conceptualization, mea-
of facility type across states. Twenty-two facilities surement, and correlates of resident quality of life,
(33%) refused to participate, but they did not differ and include articles focusing on a single quality-of-
from participating facilities with respect to type, size, life measure (Brooker; Samus et al.) and comparing
or location. The final sample included 14 facilities multiple measures (Edelman, Fulton, Kuhn, &
(31%) with fewer than 16 beds, 11 (24%) traditional Chang; Sloane, Zimmerman, Williams, et al.).
facilities, 10 (22%) new-model facilities, and 10 They discuss the different perspectives of what
(22%) nursing homes. Twelve facilities were from components constitute aggregate quality of life and
North Carolina, and all other states had 11 facilities. the measures and methods of data collection that
Residents were randomly selected in each facility arose from these concepts. Because of these differ-
from among those 65 years of age or older who had a ences, correlations between measures are moderate
diagnosis of dementia, excluding those who had a at best, suggesting that multiple indicators are
primary diagnosis of Huntington’s disease, alcohol- needed to adequately reflect the richness of life.
related dementia, schizophrenia, manic-depressive The next six articles are brief reports from the
disorder, or mental retardation. To maintain repre- CS-LTC Dementia Care study, focusing on discrete
sentation across facility type, a maximum of 4 domains of quality of life. Recognizing that aggre-
residents per smaller facility and 19 per larger facility gate measures of quality of life do not easily translate
was established. A total of 575 eligible residents or to practice recommendations, a liaison panel con-
their families were approached for consent. Of these, vened by the Alzheimer’s Association suggested
421 (73%) agreed to participate, 66 (11%) refused, focused attention to six critical areas—depression,
and 88 (15%) were unable to provide consent and behavioral symptoms, mobility, pain, food and fluid
had family who were unreachable. intake, and activity involvement—each of which is
6 The Gerontologist
the topic of a brief report. All reports are constructed across the two types of settings (Sloane, Zimmer-
with a similar format, addressing the prevalence of man, Gruber-Baldini, et al.). The second article is
problems within the domain, methods for assessing a comprehensive examination of structural and
and treating residents in the domain, and staff process elements of care in the CS-LTC Dementia
training in the domain. Associations between Care study and how they relate to 11 measures of
domain attributes and resident and facility character- quality of life, including change in quality of life over
istics also are reported. The findings clearly demon- 6 months. Findings from this study have important
strate room for improved outcomes in these critical implications for staffing and facility policies and
areas: between 50% and 60% of residents with practices, including staff attitudes and training
dementia display behavioral symptoms and low food (Zimmerman, Sloane, Williams, et al.).
and fluid intake, 20% to 25% exhibit depression or Research in quality-of-life assessment and care in
pain, and 14% have high mobility limitations. Staff RC/AL and nursing homes is in its infancy. Sample
assessment and perception of impairment is highest size limitations in the work presented in this issue
for behavior, but lowest for fluid intake, and restrict the ability to conduct complex model testing,
perceived success of treatment is highest for pain and the cross-sectional nature of much of the data
management. Between 50% and 75% of adminis- limits the ability to draw causal inferences. Ideally,
trators report training the majority of their staff in larger and longitudinal studies will be conducted
all domains of care, and more than 75% of staff feel across the range of long-term care settings such as
adequately trained to assess and treat each domain. those included in this issue, using admissions cohorts
Based in part on the findings of these studies, the and monitoring quality of life and determining the
Association has focused its first set of practice components of care that relate to quality of life from
recommendations on pain, food and fluid intake, the moment their influence begins. As will become
and activity involvement, and recommendations in clear through the information presented in the
other areas are forthcoming (Alzheimer’s Associa- articles to follow, such an undertaking will require
tion, 2005). multiple measures; further, it should be conducted in
The next four articles are special topics related to close collaboration with community partners who
quality of life and quality of care. The first three use can advise on the practicalities of care provision and
data from the CS-LTC Dementia Care study, help assure that resulting information can be used to
addressing two important contributors to quality improve practice and policy. Given the increasing
of life in RC/AL facilities and nursing homes: numbers of individuals with dementia who reside in
families and staff. The first discusses how families assisted living and nursing homes, the importance of
fill care provision gaps, concluding that they tailor this effort cannot be overstated.
their involvement in accordance with the needs of
the resident and the setting (Port et al.). The second
two (Zimmerman, Williams, et al.; Winzelberg,
References
Williams, Preisser, Zimmerman, & Sloane) address
Albert, S. M., & Logsdon, R. G. (2000). Assessing quality of life in
staff attitudes, stress, and satisfaction, with findings
Alzheimer’s Disease. New York: Springer Publications.
indicating that person-centered attitudes and more
Alzheimer’s Association. (2005). Dementia care practice recommendations for
staff training relate to higher quality-of-life ratings assisted living residences andnursing homes.Chicago: Author. Also available
athttp://www.alz.org/downloads/dementiacarepracticerecommendations.pdf
and worker satisfaction. The fourth is an ethno-
Fazio, S., Seman, D., & Stansell, J. (1999). Rethinking Alzheimer’s care.
graphic study, examining issues that relate to Baltimore, MD: Health Professions Press, Inc.
transitions into, out of, and within RC/AL, for Institute on Medicine. (2001). Improving the quality of long-term care.
Washington, DC: National Academy Press.
residents with dementia (Mead, Eckert, Zimmerman,
Kovach, C. R. (1996). End-stage dementia: A basic guide. Washington, DC:
& Schumacher). Taylor & Francis Publishing Co.
Two additional studies specifically address the Sloane, P. D., Zimmerman, S., Suchindran, C., Reed, P., Wang, L., Boustani,
M., et al. (2002). The public health impact of Alzheimer’s disease, 2000–
relationship of care to quality of life and resident
2050: Potential implications of treatment advances. Annual Review of
outcomes. The first is based on a larger CS-LTC Public Health, 23, 213–231.
study of 1,252 participants, and compares outcomes Volicer, L., & Bloom-Charette, L. (1999). Enhancing the quality of life in
advanced dementia. Ann Arbor, MI: Taylor & Francis Publishing Co.
for residents with dementia in RC/AL facilities and
Zimmerman, S., Gruber-Baldini, A. L., Sloane, P. D., Eckert, J. K., Hebel, J.
nursing homes, examining mortality, hospitalization, R., Morgan, L.A., et al. (2003). Assisted living and nursing homes: Apples
and oranges? The Gerontologist, 43, 107–117.
morbidity, and change in functional status over one
Zimmerman, S., Sloane, P. D., & Eckert, J. K. (Eds.). (2001). Assisted living:
year. With the exception of residents with major
Needs, practices and policies in residential care for the elderly.
medical needs, outcomes did not differ significantly Baltimore, MD: The Johns Hopkins University Press.
Vol. 45, Special Issue No. I, 2005 7
The Gerontologist Copyright 2005 by The Gerontological Society of America
Vol. 45, Special Issue I, 8–10
Dementia Care and Quality of Life in Assisted
Living and Nursing Homes: Perspectives of
the Alzheimer’s Association
1 1
Katie Maslow, MSW, LCSW, and Elizabeth Heck, MSW, LCSW
In funding the Collaborative Studies of Long- study and its implications for policy and practice.
Term Care (CS-LTC) Dementia Care study that is The research team was willing and actually gave us
the basis for most of the articles in this special issue much more than we requested. The liaison panel
of The Gerontologist, the Alzheimer’s Association participated in three 2-day meetings with the
hoped to learn more about measuring quality of life research team and helped to identify areas of care
in people with Alzheimer’s disease and other for special attention in the study and the later analysis
dementias. The Association also hoped to learn of its findings. Having the liaison panel required
about care practices and other factors associated a commitment of time and resources from the panel
with quality of life to support our efforts to develop members, the research team, and national Association
guidelines for dementia care in assisted living and staff. From our perspective, the time and resources
nursing homes. The study findings, as reported in were well spent.
this issue, exceeded our expectations. The inclusion Measuring quality of life in people with dementia
of findings on the same topics from studies funded by is difficult and, in fact, is usually not done. The
the National Institute on Aging, Mather Institute on CS-LTC Dementia Care study tested many ways of
Aging, and others adds to the value of the special measuring quality of life. Residents with dementia
issue, making it a source of important new who were thought to be able to respond (those with
knowledge about Alzheimer’s and dementia care. Mini-Mental State Exam [MMSE] scores of 10 or
TheCS-LTCDementiaCare study involved several higher) were asked about various aspects of their
firsts for the Alzheimer’s Association. In 2000, after
quality of life. Nursing home staff members and
the Association’s Medical and Scientific Advisory
family members were interviewed, and several
Board decided to fund Dr. Sheryl Zimmerman’s
observational methods were used. The Association
investigator-initiated proposal for a study of quality
was particularly interested in Dementia Care Map-
dementia care in assisted living, another Association
ping (DCM) and provided additional funding to
division, the Program and Community Services
Division, decided to add substantial funding to include DCM as one of the observational methods.
expand the scope of the study. This was the first Findings from the CS-LTC Dementia Care study
time in the history of the Alzheimer’s Association that show that conclusions about residents’ quality of life
a part of the organization other than the research differ significantly, depending on who is asked and
grants program chose to fund a team of researchers. what instruments and procedures are used. The study
In another first, we asked Dr. Zimmerman if her by Edelman, Fulton, Kuhn, and Chang (2005, this
research team would be willing to accommodate issue) had similar findings, using many of the same
a liaison panel, a group of Alzheimer’s Association instruments and procedures. These findings indicate
chapter staff and national board members that we that there is no single, quick, and easy way to
thought would increase our understanding of the measure quality of life in these residents, whether for
research, staff training, quality improvement, or
quality monitoring purposes. Both research teams
conclude that different instruments and procedures
We thank the following individuals for their participation in the
liaison panel and their contributions to the study: Peggy Bargmann, are probably measuring different perspectives and
Cornelia Beck, Carolyn Cunningham, Scott Gardner, Becky Groff, Jan realities and that a combination of approaches is
McGillick, Clarissa Rentz, Linda Sabo, and Jan Weaver.
Address correspondence to Elizabeth Heck, MSW, Associate Director, needed to get a full picture of residents’ quality of life.
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measuring quality of life in people with dementia. dementia had higher self-reported burden than families
More research is needed. In the meantime, it should of nursing home residents with dementia. The
be noted that people with quite advanced dementia researchers note that assisted living facilities generally
were able to respond consistently to quality-of-life offer greater independence but less physical care and
questions in both the CS-LTC Dementia Care and protective oversight than nursing homes; they hypoth-
Edelman studies. We believe resident responses esize that the higher burdenmay result from additional
are very important and that resident interviews help provided by these families in order to obtain the
should be included in future research and quality- benefits of greater independence for their relative with
improvement initiatives. dementia. And further, that the additional help pro-
For the CS-LTC Dementia Care study, the vided by families may account in part for the lack of
research team and liaison panel identified six areas significant differences in clinical outcomes for assisted
of care for special attention: depression, behavioral living and nursing home residents.
symptoms, pain, food and fluid intake, activity Findings from an ethnographic study of decisions
involvement, and mobility. The way the research to retain or transfer residents with dementia in three
team looked at these areas of care—by measuring (a) assisted living facilities also show the importance of
the proportion of residents who had problems in additional help provided by families (Mead, Eckert,
each area, (b) whether and how these problems had Zimmerman, & Schumacher, 2005, this issue). Like
been assessed by facility staff, (c) how the problems the study by Sloane, Zimmerman, Gruber-Baldini,
were treated, (d) how staff perceived the outcomes of and colleagues (2005, this issue), this study found
treatment, and (e) how they perceived their own that discharges from assisted living facilities resulted
training, knowledge, and skills in each area—was more often from residents’ non-dementia-related
particularly appropriate and valuable for generating health crises than from any increased cognitive
practice and policy implications. The study findings impairment, behavioral symptoms, or care needs.
helped inform the selection process of the care areas These findings help to explain the high proportion of
to focus on first in our Campaign for Quality in assisted living residents who have severe cognitive
Residential Care. More importantly, the study and other impairments, despite facility retention and
served as the impetus for the Alzheimer’s Association transfer policies that would seem to require that they
to lead the Campaign that involved key stakeholders, be discharged.
care experts, our chapter network, and consumers in The CS-LTC Dementia Care study resulted in
the development of dementia care practice recom- a complex array of findings about associations
mendations that will serve as the basis for advocacy between staff attitudes, staff training, care practices,
efforts, staff training, and consumer education. and staff and resident perceptions of residents’
The Alzheimer’s Association asked Dr. Zimmer- quality of life. Some that seem important to us are:
man and her colleagues to expand the CS-LTC
1. The association between better resident percep-
Dementia Care study to include nursing homes as
tions about their own quality of life and greater
well as assisted living facilities because we thought
staff involvement in care planning (Zimmerman,
findings from the two settings would be quite
Sloane, et al., 2005, this issue);
different. In fact, the study found surprisingly few
2. The association between better nursing assis-
differences across settings in resident and staff
tants’ perceptions of residents’ quality of life,
characteristics and clinical outcomes of care. This
the nursing assistants’ positive attitudes about
finding is important for policy purposes, for example,
person-centered care, and their positive evalua-
for the development and revision of government
tions of the adequacy of their training about
regulations intended to ensure that assisted living
dementia care (Winzelberg, Williams, Preisser,
facilities and nursing homes are capable of meeting
Zimmerman, & Sloane, 2005, this issue); and
their residents’ service needs.
3. The association between staff members’ confi-
Despite the general finding of few differences
dence in their ability to provide good dementia
between assisted living and nursing homes, two
care, positive attitudes about person-centered
articles in this issue identify specific differences we
care, and higher self-reported job satisfaction
think are important for anyone who is trying to
(Zimmerman, Williams, et al., 2005, this issue).
choose the most appropriate residential care setting
for a person with dementia. One article (Sloane, As noted by the researchers, the cross-sectional
Zimmerman, Gruber-Baldini, et al., 2005, this issue) nature of the data that underlie these and other
points out that hospitalization rates were higher for findings from the CS-LTC Dementia Care study
residents with mild dementia in assisted living versus means that the direction of the associations is not
nursing homes; the researchers suggest that assisted certain, and some of the findings may be most useful
living facilities may have more difficulty than nursing for generating hypotheses for future research. The
homes taking care of a person with dementia who has only longitudinal component of the study, which
substantial and/or unstable medical or nursing needs. measured change in staff perceptions of residents’
A second article (Port et al., 2005, this issue) points quality of life during a 6-month period, found less
out that families of assisted living residents with decline in quality of life for facilities that had more
Vol. 45, Special Issue No. I, 2005 9
staff training centered around the six areas of care families and greater resident participation in
and more frequent activities and staff encouragement activities (Dobbs et al., 2005, this issue).
of resident participation in activities (Zimmerman,
Other readers will certainly note other findings that
Sloane, et al., 2005, this issue).
strike them as important for care as well as research
Many other findings from the research reported in
and policy.
this issue strike us as important for dementia care.
We hope this issue of The Gerontologist will
These findings include:
stimulate future research and public and private
1. The association between resident depression and initiatives to improve quality of care. We are grateful
behavioral symptoms, that depression was de- to Dr. Zimmerman, Dr. Sloane, the research team
tected in only half the residents where it was for the CS-LTC Dementia Care study, and the other
present, and that nursing home residents were researchers who have contributed findings from their
more likely to be treated by a mental health studies to this special issue. We also are grateful to
professional and reside in facilities that include our guest editor, Dr. Richard Schulz, for his time,
mental health professionals in formal care plan- diligence, and insight in bringing the special issue
ning (Gruber-Baldini et al., and Boustani et al., to fruition.
2005, this issue); The Alzheimer’s Association welcomes proposals
2. The relatively modest level of agreement between for future studies on these topics. We hope other
residents and supervisors about whether the funders also will solicit and fund such proposals.
resident had pain, and the finding that one third More than half of all nursing home residents and
of residents with pain were not receiving any substantial proportions of assisted living residents—
treatment for it (Williams, Zimmerman, Sloane, a million people or more at any one time—have
& Reed, 2005, this issue); Alzheimer’s disease or other dementias. Research to
3. The finding that residents who had meals in public improve care and outcomes for residents with these
dining areas (rather than in their own rooms) and conditions is clearly important.
residents who had meals in dining areas with more The Alzheimer’s Association will continue to
noninstitutional features were less likely to have advocate for improvements in care for assisted living
low food and fluid intake (Reed, Zimmerman, and nursing home residents with dementia based on
Sloane, Williams, & Boustani, 2005, this issue); the best available evidence. We appreciate the many
4. The association between mobility limitations and organizations and individuals that have worked with
lowfluid intake (S.Williams et al., 2005, this issue); us thus far to produce and disseminate completed
5. The association between grooming and staff and guidelines and training programs. We urge others to
residents’ perception of the residents’ quality of join our ongoing efforts to develop new guidelines,
life (Zimmerman, Sloane, et al. 2005, this issue); revise existing guidelines as new knowledge becomes
and available, and disseminate existing information and
6. The association between greater involvement of training to improve quality of care.
10 The Gerontologist