Πέμπτη, 5 Ιανουαρίου 2017

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

ABSTRACT
PURPOSE Dementia case management (CM) in primary care is a complex intervention
aimed at identifying the various needs of patients with dementia and
their caregivers, as well as the organization and coordination of care. A key element
of CM is the collaboration of family physicians with case managers. We
conducted a systematic mixed-studies review to identify the needs of the patientcaregiver
dyad and the effects of CM.
METHODS We searched MEDLINE, PsycINFO, and EMBASE up to October 2014,
regardless of the study design. Our main outcomes were needs of patients and
their caregivers and the effects of CM on these needs. We used narrative syntheses
to develop a taxonomy of needs and to describe the effects of CM on those
needs. We used meta-analysis to calculate the prevalence of needs and the standardized
mean differences to evaluate the effects of CM on the needs identified.
RESULTS Fifty-four studies were included. We identified needs of the patientcaregiver
dyad and needs of the patient and caregiver individually. CM
addressed the majority of the identified needs. Still, some very common needs
(eg, early diagnosis) are overlooked while other needs (eg, education on the disease)
are well addressed. Fully establishing the value of CM is difficult given the
small number of studies of CM in primary care.
CONCLUSIONS There is good evidence that case managers, in collaboration with
family physicians, have a pivotal role in addressing the needs of the patientcaregiver
dyad.
Ann Fam Med 2016;14:166-177. doi: 10.1370/afm.1898.
INTRODUCTION
The proportion of people with dementia is growing dramatically.
According to the US Alzheimer’s Association, by 2030, 50% of
Americans aged 65 years and older will be diagnosed with dementia.
1 In Canada in 2011, 747,000 Canadians lived with cognitive impairment.
2 Today, the combined costs are $33 billion per year,1 and they are
projected to increase to $872 billion by 2038.3,4 Worldwide, dementia is
the main contributor to disability-adjusted life years (11.2%), representing
a greater burden than cerebral vascular accident (9.5%), heart disease
(5.0%), or cancer (2.4%).5
People with dementia need help with challenging changes in behavior,
memory, physical disability, and mood.6 The main source of help is family
caregivers, who often suffer from the burdens of caregiving and from
depression and health problems.7 It has been shown that early intervention
makes the greatest difference in management of symptoms.1 The World
Health Organization states that it would be challenging to intervene without
effective involvement of primary care.8 Dementia case management
(CM) interventions are becoming a central component of primary health
care organizations in North America and Europe.9-12 According to the Case Management Society of America, case management
is “a collaborative process of assessment, planning,
facilitation, care coordination, evaluation, and
advocacy for options and services to meet an individual’s
and family’s comprehensive health needs through
communication and available resources….”13 Case
managers are health care professionals who provide
follow-up, coordinate individual care, and liaise with
other health care services. They work in collaboration
with family physicians, specialists, or both.14-22
Over the last few years, several systematic reviews
have found that the evidence of CM’s effects on service
use and clinical outcomes is weak.23-28 None of
them specifically focused on the needs of patients
and caregivers, however.23-28 Patients with dementia
and their caregivers who already receive professional
care still report unmet needs.29 Moreover, they feel
that their own opinion is not taken into account.30 In
line with the patient-centered care paradigm,31,32 it is
important to identify the needs felt by the patient and
the caregiver33-35 and to determine the extent to which
CM interventions respond to their needs.36
We conducted a systematic review to answer the
following research question: Does the collaboration of
family physicians with case managers respond to the
needs of patients with dementia and their caregivers
living in the community?
of services and their coordination, monitoring, and
regular proactive follow-up.13,41
• They had to focus on primary medical care, defined
as a range of community settings where family physicians
intervene (patients’ homes and offices).42
• They could be of any type or design.
• Their outcomes could be the effects of CM on any
type of need expressed by patients, expressed by
caregivers, or measured.
Search Strategy and Study Selection
In accordance with PRISMA statement standards,43 a
literature search was conducted by a specialized librarian;
publications in English, French, or Russian listed in
MEDLINE, PsycINFO, or EMBASE, published before
October 2014, were searched (Supplemental Appendix
1, available at http://annfammed.org/content/14/2/166/
suppl/DC1). Given the objectives of our review, 2
search strategies were applied in parallel: 1) studies of
the needs of community-dwelling patients with dementia
and their caregivers, and 2) studies of CM (Supplemental
Figure, available at http://annfammed.org/
content/14/2/166/suppl/DC1). Based on the eligibility
criteria, relevant titles, abstracts, and full-text articles
were selected independently by 1 author (V.K.) and a
research assistant (Martin Beauchamp).
Quality Assessment
The quality of the studies was assessed independently
by 1 author (V.K.) and one outside reviewer (Quan
Nha Hong, MSc) using the validated Mixed Methods
Appraisal Tool designed for the critical appraisal of
studies with diverse designs.44-46 Studies were scored
on their internal and external validity (eg, representativeness
of the sample, randomization). Studies were
included without regard to their quality. We performed
a sensitivity analysis (with a potential score of 0 or 1) to
assess the impact of lower-quality studies on the results.
Data Extraction and Synthesis
Two reviewers (V.K. and Beauchamp) independently
extracted and coded data; discrepancies were resolved
through consensus. We used a 3-step approach to synthesize
the findings:
1. We defined a need as a perceived state of deprivation
communicated by patients or their caregivers.6
The prevalence was extracted if it was reported. Needs
expressed in other domains measured by instruments
were also searched (eg, domains of quality of life).6 We
used a narrative synthesis approach to develop a taxonomy
of the needs and meta-analysis to evaluate their
prevalence.
2. A narrative synthesis approach was applied to
describe the key components of CM.
3. A narrative synthesis was used to describe CM
effects on the needs (mapping of CM components to
the needs identified in Step 1) and a meta-analysis to
estimate their effects.
Narrative synthesis was the main analytical
approach we used, while meta-analyses were performed
to explore the observed effects (Table 1).
RESULTS
Fifty-four studies were included in the review: 46 on
the needs of patients and their caregivers52-98 and 8 on
CM (Supplemental Figure, available at http://annfammed.
org/content/14/2/166/suppl/DC1). The characteristics
of the included studies are presented in Table
2, and Supplemental Appendixes 2 and 3, available at
http://annfammed.org/content/14/2/166/suppl/DC1.
Identification of Needs
Three main categories of need were identified and are
presented in Table 3: needs of the patient-caregiver
dyad, needs of the patient, and needs of the caregiver.
Many needs are common to patients and caregivers.
The needs reported by the largest number of studies
are needs of the dyad: for education or counseling on
the disease (32 studies) and early diagnosis (13 studies).
Meta-analyses showed that 58% (95% CI, 43%-
72%) of caregivers were in favor of early dementia
diagnosis, 50% (95% CI, 35%-65%) were in need of
education on the disease, and 23% (95% CI, 17%-31%)
needed in-home support (Table 4). Needs for meaningful
activities that patients could participate in and assistance
with daily activities were reported by 36% (95%
CI, 5%-85%) and 22% (95% CI, 5%-59%) of patients
with dementia respectively.
Description of Care Management
A key component of CM apparent in the studies we
examined was close collaboration between case managers
and family physicians (Supplemental Appendix 3,
available at http://annfammed.org/content/14/2/166/
suppl/DC1). The case managers involved were nurses
specialized in care of the elderly.14-18,20 They were
responsible for the coordination of treatment plans and
for providing services. Through phone calls, web-based
interactions, and case discussions, case managers communicated
regularly with family physicians to inform
them about patient and caregiver health conditions and
needs.14-22 The role of family physicians was to develop
care plans, provide medical treatment, and to modify
care plans based on updates from case managers.
We mapped the components of CM to the needs
identified from the perspectives of the patients and
their caregivers (Table 5). To meet the needs of the
patient-caregiver dyad, case managers performed the
prediagnostic work-up to assist family physicians with diagnosis.21,22 They provided education on the disease,
prognosis, treatment,16,17,19,21,22 and problematic home
situations.18 They counseled on available resources/
services,16,20 legal and financial issues, and advance
directives.14-16 Finally, case managers coordinated medical
and community services via electronic, written, and
case conference discussion.14-17,19,20
To meet the needs of patients, case managers
applied, in collaboration with family physicians, nonpharmacologic
and pharmacologic protocols for management
of daily activities,14-16 behavior distress,14-16,21,22
cognition,14-16 mood,14-16 and home safety.16,18,19
To meet the needs of caregivers,
case managers provided support
sessions and non-pharmacologic
interventions for stress management14,15,17
and coping skills.14 They
also developed care plans14-18,20-22 and
coordinated home care services16-18
and social services.16,17,21,22
Evaluation of the Effects of
Care Management
CM was able to address almost
all identified needs (Table 5). The
number of diagnoses made by family
physicians working with case
managers increased while the rate of
diagnosis by specialists without case
managers remained stable.21,22 CM
led to better education on the disease15,16,20
and provision of sufficient
information on dementia-specific
community resources.15,20 No effect
on the understanding of medical
treatment and knowledge of dementia
was shown in 1 study, however.16
CM proved to establish good coordination
of health care services,
continuity, and quality of care,14-17
except in 1 study.18
CM also better addressed the
needs of patients. More patients
received non-pharmacologic behavioral
protocols.16 Acetylcholinesterase
inhibitors were more frequently prescribed
by family physicians working
with case managers, while neuroleptics
prescription decreased.21,22 More
patients were enrolled in the Safe
Return program.16
CM also showed effects on the
needs of caregivers. Caregivers’
confidence with care increased.16
Their decision-making capacity improved,15,16 as did
satisfaction with social support,16 and in-home help
(eg, cleaning services).16,17 Moreover, caregivers were
actively involved in care-plan development and regular
discussion of the patient’s health problems.16,17
The effects on the needs for early diagnosis, financial
and legal aspects of the disease, and meaningful
activities were not studied. CM was not found to
have any effect on patients’ daily activities, cognition
and depression.
A meta-analysis of the effects of CM (Figure 1
and Supplemental Appendix 4, available at http:/annfammed.org/content/14/2/166/suppl/DC1) showed
a significant decrease in behavioral disturbance of
patients as a result of psychosocial interventions along
with acetylcholinesterase inhibitors (standardized
mean difference [SMD] -0.27, 95% CI, -0.53 to -0.01,
P = .04)14,17 and a significant increase of confidence
in caregiving (SMD 0.19, 95% CI, 0.01-0.37, P = .04)
due to the education in coping skills.16,17 The effect on
depression of caregivers was uncertain (SMD -0.23,
95% CI, -0.46 to 0.01, P = .06),14,17,18 and there was no
effect on caregivers’ burden (SMD 0.17, 95% CI, -0.18
to 0.52, P = .34).
Quality of Evidence
Almost all studies (43 studies) of the needs of the dyad
and all 8 studies of CM proved to be of high quality.
The majority of RCTs clearly described the randomization,
blinding, and drop-out rate. Most non-randomized
and quantitative descriptive studies (surveys) reported
adequate sampling strategies and measurements.Qualitative studies clearly described their inclusion and
exclusion criteria, methods of analysis, and contexts.
Exclusion of studies of lower quality did not change the
overall results (Supplemental Appendix 5, available at
http://annfammed.org/content/14/2/166/suppl/DC1).
DISCUSSION
This is the first systematic mixed-studies review conducted
to evaluate whether CM meets the needs of
patients with dementia and their caregivers. The main
novelty of our review is that we first identified the
needs from the perspectives of patients and their caregivers
and only then evaluated whether CM targeted
their needs and led to the desired outcomes. Our systematic
review showed that CM addressed most needs
of patients and caregivers. It also demonstrated that
some very common needs (eg, early diagnosis) are still
overlooked, while other needs (eg, education/information)
are well targeted.
The most frequently reported need was early
diagnosis of dementia. The impact of CM on this
important need, however, has not been evaluated.
While there is no consensus among health care profes-sionals on the early diagnosis of dementia,100-103 our
systematic review suggests that patients and their caregivers
would like to receive an early diagnosis. Early
diagnosis of dementia does not necessarily change the
disease’s course,104 but it prompts health care professionals
to identify the needs earlier and thus sustain the
quality of life for both the patient and the caregiver.105
Moreover, it may positively affect appropriate medication
prescription, decrease levels of caregiver burden
and depression, and diminish the risk of early placement
in a long-term care facility.106,107
The second most frequently reported need was education
and counseling on the disease. This finding is in
line with those of previous research, which has showed
that most unmet needs were related to a lack of knowledge
about the existing services, progression of dementia,
and management of behavioral problems.29,79,108,109
Unlike early diagnosis, this need seems to be well targeted
and appropriately addressed by CM.
Identification of the needs of patients and their
caregivers is the basis for the development of interventions
sensitive to these needs.6 CM focuses on
integration of medical and community services to
deliver patient-centered care according to the specific
needs of individual patients.13 The key element
of CM is the collaboration of case managers with
family physicians. Regular communication between
case managers and family physicians is essential to
the patient-centered care targeting these vulnerable
populations; it allows family physicians to make timely
modifications of their care plans.
Formal training of case managers in care of the
elderly is a valuable asset to the care.14-18,20 Case managers
specialized in dementia care can assess needs
promptly and follow up regularly. For instance, they
are better able to evaluate the needs of patients with
regards to daily activities and orient them to the
appropriate services (eg, mobility improvement programs).
14-16 They also assess the needs for information
and support and guide the patient-caregiver dyad to
the appropriate services (eg, the Alzheimer Society or
the Alzheimer’s Association).15,16,20 Moreover, as the
first point of contact for the dyad, they appear to be
more easily reachable than family physicians.14-18,20-22
Our previous studies demonstrated that the effectiveness
of CM depends on a small caseload, regular and
proactive follow-up, and transparent communication
among health care professionals.110,111
Limitations
As in any systematic review, we may have missed
studies that we should have included. It is unlikely,
however, that we missed large studies, as the literature
search was comprehensive and included publications in
3 languages (English, French, and Russian). The metaanalysis
of the effects of CM was conducted on a limited
number of available studies, but it was exploratory;
its conclusion should be considered with caution. The
limited number of available studies on CM in which
family physicians collaborate with case managers necessarily
limited our review.
Future Research
Future studies are needed to evaluate the effects of
CM on the needs that are overlooked—early diagnosis
of dementia, legal issues, and financial issues. An avenue
for some future studies could be the integration of
social workers into primary care to assist with financial
and legal issues of the dyad.16 Family physicians and
researchers should perceive the needs of the dyad as
unique features of patient-centered outcomes research
related to primary care.
To read or post commentaries in response to this article, see it
online at http://www.annfammed.org/content/14/2/166.
Key words: case management; dementia, primary care; collaborative
care; patient-centered care; systematic review
Submitted June 6, 2015; submitted, revised, October 15, 2015; accepted
November 8, 2015.
Previous presentation: The study was conducted by the first author
as a scholarly project at the Family Medicine residency program of the
McGill University; St. Mary’s hospital, Montreal, Canada. The preliminary
results have been presented at the North American Primary Care
Research Group (NAPCRG) conference, New York, New York, November
22 - 25, 2014, and received the Patient Choice Award http://www.annfammed.
org/content/13/3/286.full.
Acknowledgments: The authors would like to thank Alina Dyachenko,
biostatistician, St Mary’s Research Center, McGill University, for her
assistance with statistical analysis; Muriel Gueriton, specialized librarian,
Solidage, McGill University - Université de Montréal Research Group on
Frailty and Aging, for her assistance with literature search; Quan Nha
Hong, McGill University, for assistance with the methodological quality
assessment; research assistant Martin Beauchamp for assistance with
study selection; Daniëlle Jansen, Birgitte Schoenmakers, and Richard
Fortinsky for sharing the data.

Supplementary materials:
Available at http://www.AnnFamMed.
org/content/14/2/166/suppl/DC1/.

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