Effectiveness of psychosocial interventions in reducing grief experienced by family carers of people with dementia JBI Database of Systematic Reviews and Implementation Reports, 15

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SYSTEMATIC REVIEW
Effectiveness of psychosocial
 interventions in reducing
grief experienced by family carers of people with
dementia: a systematic review
Sally Wilson1,2 � Christine Toye1,3 � Samar Aoun1 � Susan Slatyer1,2,3 � Wendy Moyle4 � Elizabeth Beattie5
1Faculty ofHealth Sciences, School ofNursing,Midwifery andParamedicine, CurtinUniversity, Perth, Australia, 2TheWestern Australian Group for Evidence
Informed Healthcare Practice: a Joanna Briggs Institute Centre of Excellence, Curtin University, Perth, Australia, 3Centre for Nursing Research, Sir Charles
Gairdner Hospital, Nedlands, Australia, 4Menzies Health Institute Queensland, Griffith University, Brisbane, Australia, and 5Faculty of Health, School of
Nursing and Dementia Collaborative Research Centre: Carers and Consumers, Queensland University of Technology, Brisbane, Australia
E X E C U T I V E S UMMA R Y
Background
Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated
factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms
have been implemented. However, the effect of psychosocial interventions on family carers’ grief, loss or bereave-
ment has not been examined.
Objective
To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief,
pre- and post-bereavement, for family carers of people with dementia.
Inclusion criteria
Types of participants
Family carers of older persons with dementia (>65 years).
Types of interventions
Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers
adjust to grief during the dementia trajectory and/or following death.
Comparisons
No treatment, standard care or treatment as usual, or an alternative intervention.
Types of studies
Experimental and epidemiological study designs.
Outcomes
Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated
instruments.
Search strategy
A three-step strategy sought to identify both published and unpublished studies from 1995.
Methodological quality
Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute
Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI).
Data extraction
The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently.
Data synthesis
Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome
measures.
Correspondence: Sally Wilson, sally.wilson@curtin.edu.au
There is no conflict of interest in this project.
DOI: 10.11124/JBISRIR-2016-003017
JBI Database of Systematic Reviews and Implementation Reports � 2017 THE JOANNA BRIGGS INSTITUTE 809
©2017 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.
mailto:sally.wilson@curtin.edu.au
SYSTEMATIC REVIEW S. Wilson et al.
JBI
©
Results
Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple post-
test quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had
durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the
United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were
predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had
dementia; 68.5% had Alzheimer’s disease. Two studies measured anticipatory grief, and the third study reported
normal and complicated grief.
Moderate benefits to anticipatory grief were evident upon completion of the ‘‘Easing the Way’’ intervention (effect
size �0.43, P ¼ 0.03). After controlling for research design and control variables, for every hour increase in the
interventions focusing on family carers’ cognitive skills, there were associated decreases in carers’ normal grief
(parameter estimate [PE]¼�0.81, P¼ 0.02) and complicated grief (PE¼�0.87, P¼ 0.03). For every hour increase in
the interventions focusing on carer behavior, there was an associated decrease in carers’ complicated grief (PE ¼
�1.32, P ¼ 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an
associated decrease in carers’ complicated grief (PE ¼ �2.91, P ¼ 0.04).
Conclusion
There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief.
Findings suggest that different pre-death interventions might be warranted depending upon a family carer’s unique
clinical presentation and combination of risk factors.
Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief
following the death of the care recipient. When the cognitive skills training is provided in conjunction with
behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers’ complicated
grief symptoms may be reduced.
Keywords Anticipatory grief; dementia; family carer; grief; psychosocial care
JBI Database System Rev Implement Rep 2017; 15(3):809–839.
Background
D ementia is a syndrome characterized bydisturbances of higher cortical functions
including memory, thinking, orientation, compre-
hension, learning capacity, language and judgment.
Cognitive function impairments are frequently
accompanied by deterioration in emotional control,
social behavior or motivation.1 The syndrome
occurs in more than 100 diseases of which the most
prevalent include Alzheimer’s disease (AD), vascular
dementia, mixed dementia, frontotemporal lobar
degeneration and dementia with Lewy bodies.2
Dementia usually becomes apparent in people in
their late 70s or older, has a gradual onset, is
progressive and irreversible.2 The median life span
after a diagnosis of dementia was reported in a
systematic review as three to nine years.3
There are an estimated 46.8 million people world-
wide living with dementia with just over half (58%)
living in low- and middle-income countries.4
Dementia was the third leading cause of death in
Australia in 2010 accounting for 6% of all deaths,
which was an increase 2.4 times that of 20012 and is
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the sixth leading cause of death in the United States
(US).5 It is projected that there will be approximately
75.6 million people worldwide living with dementia
by 2030,6 400,000 Australians living with dementia
by 2020 and 900,000 by 2050.2
Of the estimated 298,000 Australians living with
dementia in 2011, two-thirds were being assisted by
approximately 200,000 informal carers in the com-
munity.2 With the predicted rise in the number of
people living with dementia and the non-institution-
alization policies encouraging residence in private
dwellings,7 it is not unreasonable to expect a similar
rise in the number of informal carers.
Informal carers are most commonly family mem-
bers, spouses, adult children or a sibling; however,
neighbors and friends also help with personal care,
transport, housework and other support for the per-
son living with dementia on an unpaid basis.2 Sixty
per cent of carers of people living with dementia take
on the role as they believe it is a family responsibility.2
As such, the term ‘‘family carer’’ was used throughout
this review and is defined as a family member or friend
who provides unpaid personal care, support and
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SYSTEMATIC REVIEW S. Wilson et al.
assistance.8,9 Family carers assist the person living
with dementia both while living in the community and
in a health or social care facility such as a hospital,
retirement village or nursing home.
Family carers of peopleliving with dementia
provide care for an average of five years,10 during
which time care demands typically increase. Carers’
roles include assisting with both basic and instru-
mental activities of daily living, such as self-care and
mobility, health care, communication, household
chores, transport, meal preparation, property main-
tenance and cognitive and emotional tasks.2 Eighty-
one per cent of family carers of people living with
dementia in the community have reported spending
more than 40 hours a week in the caring role.2 As a
consequence of this undertaking, carers experience
long-term adverse mental and physical health
effects.2,10 The effects include lack of energy, sleep
deprivation, stress-related illnesses, depression,
anxiety, stress, anger, guilt and grief.2,11
Grief is a normal psychological reaction in
response to a significant loss.12 Family carers of
people living with dementia typically experience
multiple losses.13 Initially, they experience anticip-
atory grief or pre-death grief,14 which is grief for the
loss of personhood and a sense of who they were
from the family carer’s perspective,14 and loss of
companionship, personal freedom and control.12
Grief also occurs from losses in the quality of the
relationship, intimacy, memory, communication,
social interaction, health status and opportunities
to resolve issues from the past.15,16 Ambiguities
about the future, anger, frustration and guilt are
factors that contribute to carers’ anticipatory grief.12
This grief is likely to be prolonged due to the pro-
gressive nature and extended duration of demen-
tia.14 Anticipatory grief is exacerbated by the loss
experienced when the person living with dementia is
no longer able to remain at home and becomes a
resident in a care facility.14 Finally, family carers
experience grief for the loss upon death of the person
with dementia or the bereavement. While grief is a
normal experience following a major loss, family
carers’ grief can become complicated or prolonged
when a person experiences cognitive, behavioral and
emotional distress causing impairment in social
functioning and performance for more than six
months following a bereavement.17 In recognition
of the dysfunction caused by complicated grief,
‘‘persistent complex bereavement disorder’’ was
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included in the Diagnostic and Statistical Manual
of Mental Health Disorders fifth edition in 2013 as a
condition that requires further study. Further, ‘‘pro-
longed grief disorder’’ has been proposed for
inclusion in the next version of the International
Statistical Classification of Diseases and Related
Health Problems.17 Features of complicated grief
may include post-traumatic stress disorder, depres-
sion, anxiety, suicidal thoughts and poor physical
health12 but they are separate to these disorders and
do not typically respond to standard interventions
for each.17
The prevalence, predictors and associated factors
of grief in family carers of people with dementia
before and after the death of the person with demen-
tia were identified by authors of a systematic review
following synthesis of results from 31 studies encom-
passing both quantitative and qualitative data.12
Anticipatory grief was greatest in spouse carers when
the person living with dementia was in the moderate-
to-severe stage of dementia and increased when the
person living with dementia was moved to reside in a
health or social care facility. The authors reported
poor quality evidence relating to the prevalence of
grief in family carers but the prevalence of anticipat-
ory grief in carers was cited as 47–71%, and com-
plicated grief following the death of the person with
dementia was reported in 20% of carers. Predictors of
normal and complicated grief post-death were
reported as being a spouse carer and having depres-
sion before the death of the person with dementia.
Although grief in carers can be expected, the authors
recommended identifying carers at risk of distressing
anticipatory and complicated grief and targeting
interventions to reduce morbidities in family carers.12
As family carers’ grief has been recognized, and
risk factors for distressing and complicated grief
have been identified, interventions have been devel-
oped and implemented to assist family carers
manage normal grief and reduce complicated
grief.10,11,18-21 Interventions such as Easing the
Way,20 Canadian Hospice Palliative Care Associ-
ation model,18 the 3-A Caregiver Grief Intervention
Model11 and The Chronic Grief Management Inter-
vention10 have all been published with the aim of
relieving grief either pre- or post-death or both.
These interventions all offer psychosocial support
to family carers but differ in what is provided, the
frequency and the modes of delivery. For example,
the 3-A Caregiver Grief Intervention Model,11 is
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SYSTEMATIC REVIEW S. Wilson et al.
focused on the healthcare professional acknowledg-
ing family carer grief as a normal part of the demen-
tia trajectory, assessing family carer grief and
provides a framework to assist the family carer work
through their grief. The intervention is individual-
ized to each family carer, provided while the care
recipient is residing at home or in residential care and
has no set duration.11 However, The Chronic Grief
Management Intervention10 is a 12-week structured
program, delivered to groups of family carers to
increase family carers knowledge, communication
and resolution skills and chronic grief management
skills following the transition of the care recipient to
long-term care. While the resources required to
deliver the psychosocial programs differ, they all
aim to reduce family carers’ grief.
Many systematic reviews have been published
that report synthesized findings of the effectiveness
of interventions for carers of people living with
dementia.22-25 The outcomes reported include the
effect on carers’ depression,22-25 anxiety,22,25 bur-
den,22-25 quality of life,22,24 self-efficacy,22,23 satis-
faction,22 social support,22 stress,25 coping25 and
carer wellbeing.23,24 In addition, systematic reviews
have reported the effectiveness of interventions on
people living with dementia including rate of hospi-
talization, length of hospital stay and costs,24,26 the
reliability, validity and feasibility of instruments
used for screening carer burden,27 and family
involvement in decision making for people living
with dementia.28 Several protocols are registered
in PROSPERO19,29-32 and the JBI Database of Sys-
tematic Reviews and Implementation Reports.33,34
However, none of them propose to examine the
effect of psychosocial interventions on family carers’
grief, loss or bereavement. With the expected rise in
the number of family carers of people living with
dementia and recognition of the effects of grief on
family carers, it was timely to synthesize the data on
the impact of psychosocial interventions on grief,
loss and bereavement in family carers of people with
dementia to provide the evidence to inform practice
in this area.
The current review was conducted according to
an a priori published protocol.35
Objective
The objective was to examine the existing
evidence regarding the impact of psychosocial inter-
ventions to assist adjustment to grief, pre- and
JBI Database of Systematic Reviews and Implementation Reports
©2017 Joanna Briggs Institute. Unauthorize
post-bereavement for family carers of people with
dementia residing in the community or in a health or
social care facility.
Specifically, the review question was: What psy-
chosocial interventions for family carers of people
with dementia are most effective in, or are associated
with, reducing:
�
d r
anticipatory grief?
�
 post-death grief (bereavement)?
�
 complicated grief?
Inclusion criteria
Types of participants
Studies that included family carers of older persons
withdementia (>65 years) were considered for this
review. There were no age limits on participants and
family carers including spouses, adult children, sib-
lings, friends and neighbors who provided unpaid
personal care, support and assistance. Studies that
included both paid and unpaid carers were excluded
unless the family carer data could be extracted
separately. The definition of dementia was not
restricted to any specific type, stage or degree of
severity; however, studies of family carers of people
living with early-onset dementia were excluded.
Early-onset dementia is characterized by onset
before the age of 65 years and has a rapid, deteri-
orating course.1 The diagnosis is uncommon, diffi-
cult and often delayed.2 Further, it is not known
whether the impact on family carers differs from
those of carers of later onset dementia. The carer’s
grief may be related to additional losses such as loss
of income and the loss of status associated with being
a family member of someone in the workforce. These
losses would not be specific to dementia.36 There-
fore, family carers of people with early-onset demen-
tia were not included in this review.
Studies were included regardless of whether a
clinical diagnosis had been reported. However,
papers that focused only on mild cognitive impair-
ment without specifying the main focus on dementia
and studies of people who had had a dual diagnosis
were excluded.
Types of interventions
Studies that evaluated psychosocial interventions
delivered in health and social care facilities and
community settings designed to assist family carers
adjust to grief, loss and bereavement both during the
dementia trajectory and/or following death were
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SYSTEMATIC REVIEW S. Wilson et al.
considered for this review. Psychosocial interventions
were defined as any intervention that emphasized
psychological or social factors rather than biological
factors37 and included, but were not limited to, sup-
port groups, counseling, models of care, self-care or
self-management interventions, educational pro-
grams, workshops, telehealth and online support.
Studies that reported the effectiveness of drugs or
other medical interventions were not included.
Comparators
Comparators included, but were not limited to, no
treatment as a control, standard care or treatment as
usual or an alternative intervention. Comparisons
between different modes of delivery (online versus
telephone delivery); and comparators between
different frequency or duration of interventions were
included. Papers that reported correlates of grief but
were not reporting the effectiveness of an interven-
tion to reduce grief were excluded.
Types of studies
The review considered both experimental and epi-
demiological study designs including randomized
controlled trials (RCTs), non-RCTs, quasi-exper-
imental studies, before and after studies, prospective
and retrospective cohort studies, case-control studies
and analytical cross-sectional studies for inclusion.
The review also considered descriptive epidemiolog-
ical study designs including case series, individual
case reports and descriptive cross-sectional studies.
Outcomes
Studies that reported an outcome of grief in family
carers were considered for this review. Outcomes
included, but were not limited to, anticipatory grief,
grief, complicated grief, complex grief, prolonged
grief disorder, loss and bereavement measured with
validated instruments such as the Marwit-Meuser
Caregiver Grief Inventory (MM-CGI) and short
form (MM-CGI-SF), Prolonged Grief Disorder-12
and 13, Bereavement Risk Assessment Tool,
Bereavement Risk Index, Bereavement Experience
Questionnaire-24, Core Bereavement Items, Grief
Evaluation Measure, Grief Experience Question-
naire, Hogan Grief Reaction Checklist, Inventory
of Traumatic Grief, Revised Grief Experience Inven-
tory, Texas Revised Inventory of Grief (TRIG), Two-
Track Bereavement Questionnaire (TTBQ-CG30),
Brief Grief Questionnaire, Inventory of Complicated
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Grief (ICG) and ICG-Revised (ICG-R). Studies that
reported grief in family carers as a secondary out-
come were included.
Search strategy
The search strategy aimed to find both published and
unpublished studies. A three-step search strategy
was utilized in this review. An initial limited search
of MEDLINE (Ovid) and CINAHL Plus with full
text (EBSCO) was undertaken followed by analysis
of the text words contained in the title and abstract,
and of the index terms used to describe the article. A
second search using all identified keywords and
index terms was undertaken across all included
databases. Third, the reference list of all identified
reports and articles was searched for additional
studies. Studies published in English and those pub-
lished from 1995 were considered for inclusion in
this review. An early definition of complicated grief
was published in 1995 when it was recognized as a
separate entity to depression and anxiety;38,39 thus,
psychosocial interventions to address grief would
not have occurred before this date. The final search
was undertaken on September 9, 2016. Alerts were
set within the databases and the last article reviewed
for inclusion occurred on October 4, 2016.
The databases searched included CINAHL Plus,
MEDLINE (Ovid), PubMed, Embase, PsycINFO, Sci-
ence Direct, Web of Science, APAIS Health, ATSI-
Health and Rural Health. Although MEDLINE and
PubMed have the same content, PubMed provided
access to ‘‘in process’’ citations or more recently added
records. Further, PubMed was used as a way of check-
ing that no records were missed in MEDLINE.
The search for unpublished studies included Pro-
Quest Dissertation and Theses, TROVE, Google
Scholar, CareSearch, NHMRC, Dementia Collabo-
rative Research Centre and Resources for Enhancing
Alzheimer’s Caregiver Health (REACH) websites.
Initial keywords used were:
Dementia: dementia OR vascular dementia OR
mixed dementia OR Lewy Body OR frontal lobe
OR Alzheimer�.
Carer: carer OR spouse OR family caregivers
OR caregiver.
Phenomena of interest: caregiving grief OR anticip-
atory grief OR complicated grief OR prolonged grief
OR chronic grief OR maladaptive grief OR palliative
OR palliation OR mental health OR caregiver
burden.
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SYSTEMATIC REVIEW S. Wilson et al.
Interventions: blended model OR Caregiver
Grief Intervention Model OR Dementia Caregiver
Grief Model OR Easing the Way OR model of
grief care OR intervention� OR program�, person-
centered care, support group OR counseling OR self-
help group OR widow to widow program OR
bereavement service OR Instrumental Activities
of Daily Living OR case management OR
social support.
Study type: Quantitative OR quantitative study OR
randomized controlled trial OR non-randomized
controlled trial OR experimental OR quasi-exper-
imental OR observational study OR case-control
OR cohort OR descriptive OR case series OR
cross sectional.
The full search strategies for Medline (Ovid) and
CINAHL Plus are provided in Appendix I.
Method of the review
Titles and abstracts were screened and full papers
retrieved where there was uncertainty about the
eligibility. Full papers were reviewed and assessed
against the inclusion and exclusion criteria using the
Eligibility Screening Form40 (Appendix II). Papers
selected for retrieval were assessed by two reviewers
independently for methodological validity prior to
inclusion in the review using standardized critical
appraisal instruments from the Joanna Briggs Insti-
tute Meta Analysis of Statistics Assessment and
Review Instrument (JBI-MAStARI) (Appendix III).
Any disagreements that arose between the reviewers
were resolved through discussion or with a third
reviewer.
Data extraction
Data were extracted from papers included in the
review by two reviewers independentlyusing the
standardized data extraction tool from JBI-MAS-
tARI (Appendix IV). The data extracted included
specific details about the study methods, popu-
lations, interventions and outcomes relevant to the
review objective and question.
Data synthesis
Statistical pooling of results was not possible due to
the heterogeneity of the interventions and the out-
come measures. Therefore, the findings are pre-
sented in narrative form including a table to aid in
data presentation where appropriate.
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©2017 Joanna Briggs Institute. Unauthorize
Results
Description of studies
Four hundred and twenty-seven articles were ident-
ified. These included 32 articles found by manually
reviewing the end text reference lists in full-text
articles and using the ‘‘find similar’’ function within
databases. Limiters were set in databases such as
CINAHL to reduce the number of duplicate articles
retrieved; however, 95 duplicate articles were
found. Following initial screening, a full study report
was not found for a conference abstract despite
thorough searching and unsuccessful attempts to
communicate with the primary author.41 However,
32 full-text articles were retrieved and assessed for
eligibility. The authors of one study clarified that it
did not meet the eligibility criteria for this systematic
review as the diagnoses for >60% of the care recip-
ients was other than dementia.42 On completion of
the assessment for eligibility, a further 28 articles
were excluded. The three remaining articles that
were assessed for quality were included in the data
synthesis. The study selection flowchart is shown in
Figure 1.
The study designs included an RCT,43 a pilot pre-
test, multiple post-test quasi-experimental design44
and a pilot study using a single group, repeated
measures design.20 All studies were undertaken in
the US.20,43,44 The care recipients were residing in
long-term care facilities in one study,44 whereas the
others were residing with the family carer when the
studies commenced.20,43 There were a total of 327
participants, of which 197 received interventions
and 130 were controls. Characteristics of the family
carers included 277 (84.7%) females, 145 (44.3%)
were caring for their spouse, 240 (73.4%) were
Caucasian and the mean age range was from 60.7
to 80.9 years. The mean age range of care recipients
was 77.7–83.4 years. All care recipients had demen-
tia of which 224 (68.5%) had AD, 83 (25.4%) had
either AD or dementia and 20 (6.1%) had dementia,
and the cause was not provided. The results included
from the RCT were from a subgroup of family carers
who became bereaved while participating in the
overarching REACH study.45 Thirteen care recipi-
ents died during the other two studies,20,44 and seven
care recipients were no longer being cared for at
home20 at the three-month data collection timepoint
which was immediately on completion of interven-
tions. However, data from the family carers were
included in the analysis in both studies. The
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Number of records after duplicates 
removed (N=332)
Number of records 
excluded (N=300)
Number of records 
screened (N=332)
Number of articles 
excluded on reading full-
text (N=29)
Number of full-text 
articles assessed for 
eligibility (N=32)
Number of records identified 
through a systematic search 
(N=395)
Number of additional records 
identified through other sources 
(N=32)
Number of articles 
assessed for quality 
(N=3)
Number of articles 
excluded on critical 
appraisal (N=0)
Number of articles included 
(N=3)
From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for
Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(6): e1000097.
Figure 1: Flowchart of search and study selection process
SYSTEMATIC REVIEW S. Wilson et al.
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SYSTEMATIC REVIEW S. Wilson et al.
characteristics and the results of included studies are
provided in Appendix V.
Different multifaceted psychosocial interventions
were implemented in each study, and the types of grief
evaluated also varied. The programs were all deliv-
ered to family carers with program durations of
four,10 five20 and six months.43 Two programs were
run as group sessions,43,44 and the other was delivered
on a one-to-one basis either in person or by telephone
following individual assessments20 (Table 1).
The ‘‘Easing the Way’’ program was based on a
grief model46 and was aimed at participants’ anticip-
atory grief, mental health and learning needs.20 The
program targeted the following components of grief:
heartfelt sadness and longing, worry and isolation,
and personal sacrifice burden which are the three
subscales of the Marwit-Meuser Caregiver Grief
Inventory Short Form (MMCGI-SF).20
Table 1: Interventions provided in included studies
Intervention Components
Easing the Way20
Provided by professional
counselor
� Heartfelt sadness and lon
� Worry and isolation
� Personal sacrifice burden
Chronic grief manage-
ment intervention
(CGMI)44
Provided during 1st year
post-placement by
psychiatric nurses
� Disease knowledge
� Communication skills
� Conflict management ski
� Grief processing skills
Resources for Enhancing
Alzheimer’s Caregiver
Health (REACH) Pro-
gram43
Provided by trained
interventionists;
matched for race, ethni-
city and language to
those of caregivers
12 classified according to t
geted entity:
� Caregiver
� Care recipient
� Sociophysical environme
Each contained the followi
functional domains:
� Cognition knowledge
� Cognition skills
� Behavior
� Affect
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The Chronic Grief Management Intervention
(CGMI) used guided discussion to provide knowl-
edge and teach skills in communication, conflict
resolution and chronic grief management.10 Family
carers’ anticipatory grief was reported.
The REACH program was based on a cognitive
behavioral therapy framework and provided psycho-
education and support for family carers.43 It had
multiple interventions. Therefore, in an attempt
to understand what components were associated
with decreasing grief responses, following a factor
analysis, the interventions were classified into four
functional domains: cognition knowledge, cognition
skills, behavior and affect for each of three targeted
entities: caregiver, care recipient and sociophysical
environment, giving 12 separate components of the
intervention (Table 1). The original aim of the
REACH program was not to target family carers’
Mode of delivery Duration
ging In person or by
phone
One-on-one,
individually tailored
3–8 sessions
3–4-week interval
between sessions;
Each session 1–2 h
duration
lls
Group 12 weekly sessions
Each session 60–90
min duration
ar-
nt
ng
Various: in person,
phone, computer
One-on-one, group
Varied between pro-
grams (20 week-
ongoing) but all
measured following 6
months
Varied between sites:
total time ranged 2–
26 h/per component
Sites delivered 1 or 2
components
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Table 2: Assessment of methodological quality (controlled trials)
Reference Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 Q10
Holland et al.43 Y N U NA NA Y Y Y Y Y
Paun et al.44 Y N U N NA Y Y Y Y Y
% 100 0 0 0 0 100 100 100 100 100
N, no; NA, not applicable; U, unclear; Y, yes.
SYSTEMATIC REVIEW S. Wilson et al.
grief; however, the authors reported family carers’
grief following bereavement and complicated grief.
Two studies included controls. The controls
received standard care or minimal care such as a
phone call to provide support.43,44
Four different instruments were used to collect
measures of griefacross the included studies.
Although current grief of family carers was measured
with the MMCGI,44 the MMCGI-SF20 and the
TRIG,43 current grief was measured while the care
recipients were alive in two studies; therefore anticip-
atory grief was measured,20,44 whereas grief post-
bereavement was measured by TRIG.43 Complicated
grief of family carers was measured with the ICG.43
Authors reported reliability and validity of each
instrument for application in the contexts used. The
instruments used items on Likert scales and were
completed by the family carers. Results were reported
as total scores and domain scores.
Baseline grief data were collected in two stud-
ies.20,44 As improving grief was not an aim of the
REACH study, grief was not measured prior to the
intervention.43 Data measuring grief were collected
on completion of the interventions in each study, at
three months post-completion of interventions20,44
and at six and 12 months post-completion of the
intervention.43
Methodological quality
The two studies with control groups fulfilled six of the
10 assessment criteria indicating a medium level of
quality43,44 (Table 2). Potential biases were
Table 3: Assessment of methodological quality (des
Reference Q1 Q2 Q3 Q4
Ott et al.20 N Y Y Y
N, no; NA, not applicable; U, unclear; Y, yes.
JBI Database of Systematic Reviews and Implementation Reports
©2017 Joanna Briggs Institute. Unauthorize
introduced as it was not possible to blind participants
as to whether they were receiving the psychosocial
interventions (Question 2). Further, the instruments
used to collect data were self-report (Question 5).
These two factors increase the risk of bias in the
outcomes reported on the grief scales.
Ten people withdrew or were lost to follow-up
from the study by Paun et al.,44 of which three were in
the intervention group. The withdrawals were
described and did not differ from those who remained
in the study (Question 4). As the withdrawals
occurred within the early weeks of the study, the data
were not included in the final analysis. The reasons for
participants withdrawing from the study were pro-
vided; however, they do not eliminate the risk of
selection bias as the larger number of participants
withdrew from the control group.44 Further, 12 care
recipients died; eight in the control group, four in the
intervention group of whom two died during the
intervention and two during the follow-up period.
Results from family carers of those who died were
included, and intention to treat analysis was per-
formed with missing data imputed using a multiple
imputation computer program, thus minimizing the
risk of bias in this area.44
The other area for potential selection bias was
that although participants were randomized to the
treatment groups, insufficient information was pro-
vided as to whether the allocation was concealed
from the allocators in each study (Question 3).43,44
The third study met six of the nine quality criteria
also indicating a medium level of quality20 (Table 3).
criptive)
Q5 Q6 Q7 Q8 Q9
NA Y NA Y Y
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SYSTEMATIC REVIEW S. Wilson et al.
Potential selection bias was present as the sample
self-selected (Question 1). There was no comparison
group (Question 5), and there were no withdrawals
from the study (Question 7). Eight care recipients
were no longer residing at home, of whom two had
died, three months after the intervention. Therefore,
results of subgroup analyses were presented to min-
imize bias in reported estimated effects.
Findings of the review
The following narrative reports the results from the
studies to answer the research question.
Anticipatory grief
Both the pilot pre-test, multiple post-test quasi-
experimental design that evaluated the CGMI44
and the pilot study using a single group repeated
measures design that evaluated ‘‘Easing the Way’’
intervention20 measured anticipatory grief of family
carers. A moderate effect size of �0.43, P ¼ 0.026
was reported between the mean current grief scores
measured with MMCGI-SF before the ‘‘Easing the
Way’’ intervention and on immediate completion of
the intervention, of 20 spouse caregivers who lived
with the care recipients at commencement of the
study. The mean score at baseline was 56.68 [stand-
ard deviation (SD) 11.28] and mean 51.91 (SD
11.10) at five months.20 As eight of the 20 care
recipients no longer resided at home when the data
were collected three months following completion of
the intervention, the groups were stratified for
analysis by residence. The effect size for mean differ-
ences was 0.213, which was not statistically signifi-
cant (P > 0.05).20 Table 4 provides the results.
No statistically significant differences were found
in effect sizes of mean grief scores measured with
MM-CGI between the CGMI and control groups,
between baseline and completion of CGMI (0.063, P
¼ 0.775) and baseline and at follow-up, three
months following completion of the CGMI
(0.078, P ¼ 0.726) in family carers of people with
dementia residing in long-term care facilities.44
Results, including those of the control group, are
shown in Table 4. However, there was a significant
change in mean grief score for the subscale of ‘‘heart-
felt sadness and longing’’ with the intervention
group having a greater fall in the grief score than
the control group between the baseline and com-
pletion of the intervention (F ratio 5.04, ES 0.494,
JBI Database of Systematic Reviews and Implementation Reports
©2017 Joanna Briggs Institute. Unauthorize
P ¼ 0.027). This effect was not retained at the
three months follow-up after completion of the
intervention (F ratio 2.95, ES 0.380, P ¼ 0.090)44
(Table 4).
Post-death grief (bereavement)
The RCT which was part of the REACH program is
the only included study that evaluated post-death
grief. The overall efficacy of the multiple interven-
tions provided in the REACH program on the cur-
rent grief of family carers who had become bereaved
during the study, measured with TRIG, was small
with Cohen’s d ¼ 0.28, P ¼ 0.05 (n ¼ 224). The
effect size for each of the six sites were reported
separately, and the site that delivered skills training
reported improved current grief in those that
received the skills training (n ¼ 14) compared with
the control group that received minimal support (n¼
13). The large effect size was Cohen’s d ¼ 0.96 (P <
0.05). These effects had been adjusted for the family
carer’s depression scores collected on commence-
ment of the study which were assessed before the
care recipient had died. These effect sizes were
aggregated and calculated across the three data
collection points (on completion of the intervention,
at six and 12 months following completion of the
intervention).43
Findings from a multilevel analysis showed that
for every hour increase in the provision of the inter-
ventions of information and emotional support,
there was an associated decrease in current grief
on TRIG (parameter extimate [PE] ¼ �1.61, P ¼
0.05).43
After controlling for research design/control vari-
ables (depression, caregiver age, time since loss,
caregiver education level, caregiver sex, ethnicity,
relation to care recipient and post-REACH counsel-
ing), of the 12 intervention components, four were
associated with decreases in current grief measured
with TRIG. For every hour increase in the interven-
tions focusing on caregiver knowledge (PE ¼ �1.48,
P ¼ 0.01), caregiver skills (PE ¼ �0.81, P ¼ 0.02),
caregiver affect (PE ¼ �0.51, P ¼ 0.01) and
care recipient knowledge (PE ¼ �1.44, P ¼ 0.05)
caregivers had significantly lower TRIG scores.
Complicated grief
Similarly, the RCT of the REACH program was the
only included study that evaluated complicated grief.
The overall efficacy of the multiple interventions
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Table 4: Changes in anticipatory grief from baseline to completion of intervention and to three months
follow-up
nBaseline
Intervention
completion
3 months
follow-up
Effect size:
baseline-
intervention
completion
Effect size:
baseline-3
months
follow-up
Mean (SD) Mean (SD) Mean (SD)
Easing the Way intervention20
Total group 20 56.68 (11.28) 51.91 (11.10) NA �0.43,
P ¼ 0.026�
NA
Living at home 12 51.8 (10.26) 47.7 (10.18) 46.8 (10.47).
NA 0.213,
P > 0.05
No longer
residing at
home
8 62.8 (8.60) 57.9 (10.50) 62.5 (12.31)
Mean change
(SD) from
baseline
Mean change
(SD) from
baseline
Chronic grief management intervention44
Intervention
group
34 147.0 (35.8) �4.00 (23.22) �3.24 (21.27)
0.063,
P ¼ 0.775
0.078,
P ¼ 0.726Control group 49 132.7 (36.2) �2.78 (15.64) �1.71 (17.95)
Intervention
group:
sadness,
longing
subscale
34 52.2 (12.0) 3.03 (9.58) 2.21 (8.73)
F ratio 5.04,
ES 0.494,
P ¼ 0.027�
F ratio
2.95, ES
0.380,
P ¼ 0.090
Control group:
sadness,
longing
subscale
49 44.9 (14.4) 0.8 (5.93) 0.84 (7.34)
NA, not analyzed.
SD, standard deviation.
�P < 0.05.
SYSTEMATIC REVIEW S. Wilson et al.
provided in the REACH program on the complicated
grief of family carers who had become bereaved,
measured with ICG, was Cohen’s d¼ 0.25, P¼ 0.09
(n ¼ 224). The site-specific analysis showed that
complicated grief following the ‘‘coping with care-
giving’’ program (n¼ 28) was better than those who
received minimal support (n¼ 12) with an effect size
Cohen’s d ¼ 0.89 (P < 0.05). As with the current
grief, these results had been adjusted for baseline
depression scores, and the effect sizes were aggre-
gated and calculated across the three data collection
points.
JBI Database of Systematic Reviews and Implementation Reports
©2017 Joanna Briggs Institute. Unauthorize
Findings from a multilevel analysis showed that
for every hour increase in the interventions aimed at
providing cognitive and behavioral strategies, there
was an associated decrease in complicated grief on
ICG of close to two times (PE ¼ �1.89, P ¼ 0.02).43
After controlling for research design/control vari-
ables (depression, caregiver age, time since loss, care-
giver education level, caregiver sex, ethnicity, relation
to care recipient and post-REACH counseling), of the
12 intervention components, three were associated
with decreases in complicated grief. Increased
time in interventions that focused on caregiver skills
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SYSTEMATIC REVIEW S. Wilson et al.
(PE ¼ �0.87, P ¼ 0.03), caregiver behavior (PE ¼
�1.32, P ¼ 0.04) and care recipient behavior (PE ¼
�2.91, P ¼ 0.04) were interpreted as an associated
decrease in ICG for every hour of intervention.43
Discussion
The results of three studies evaluating psychosocial
interventions for family caregivers of people with
dementia and the impact on their grief were synthes-
ized. Two pilot studies evaluated the effects on
family carers’ anticipatory grief before the death
of the care recipient. One study targeted family
carers where the care recipient was still residing with
the carer20 and the other targeted family carers
during the first year of the care recipients’ placement
in long-term care.44 The third study evaluated the
impact of the REACH Program on family carers’
grief following the death of the person with demen-
tia, although the program was provided while the
care recipients were alive.43 There is little evidence
upon which to base practice with regard to inter-
ventions for any aspects of grief at present.
The two studies that evaluated anticipatory
grief20,44 addressed different multifaceted interven-
tions, durations, delivery modes and were provided
to different populations; those with care recipients
still residing with the carer20 and family carers of
care recipients living in residential care.44 Never-
theless, there were some grief-related benefits for
family carers resulting from both interventions.
These benefits were evident upon completion of
the interventions but were not apparent three
months later, although the grief scores remained
stable and had not worsened, except for family
carers of care recipients who were no longer living
at home and the move occurred during the study.20
Previous work14,47 has identified that family carers’
grief increases when the care recipient moves to
residential care which can account for the increased
grief scores three months following completion of
the intervention in that small group of family
carers.20 This may indicate that a different interven-
tion is required for family carers once the care
recipient no longer resides at home.
The program that targeted family carers once the
care recipient was residing in long-term care showed
promise in improving heartfelt sadness and longing
which measured the family carers’ sadness and long-
ing for what was in the past, that is, the old
relationship before the onset of dementia.44 The
JBI Database of Systematic Reviews and Implementation Reports
©2017 Joanna Briggs Institute. Unauthorize
intervention aimed at reducing this included coun-
seling, development of coping strategies and edu-
cation specifically targeting heartfelt sadness and
longing for family carers of care recipients who
had moved into residential care in the preceding
year. These strategies appeared to be beneficial on
completion of the intervention, and the promising
effect size was maintained three months later.44
Heartfelt sadness and longing was only one aspect
of anticipatory grief measured by MM-CGI. No
benefit was shown in the other subscales or in the
total grief scores. The authors suggest further testing
of the intervention and to include a longer follow-up
with family carers including beyond the death of the
care recipients to ascertain the long-term effects of
the program.
Due to the age of the care recipients and the nature
of their dementia-associated diseases, there are
inherent difficulties conducting studies with popu-
lations of their carers. Family carers spend increasing
time in the carer role,2,10 therefore making it challeng-
ing to find time to participate in studies and the death
of some care recipients during the intervention or
follow-up period is expected. Care recipient deaths
occurred in both studies aimed to evaluate the effects
of the interventions on grief responses while the care
recipient was still alive (anticipatory grief).20,44 Fur-
ther, some family carer participants withdrew or were
lost to follow-up following the death of the care
recipient while others remained.20,44 It is unknown
whether this self-selection was influenced by individ-
ual carer’s grief and it could be suggested that those
who felt they were benefiting from the intervention
remained in the study or those with more intense grief
felt unable to continue. Further, both studies were
pilot studies focusing on feasibility of the programs;
therefore, sample sizes were small.
The original aims of the REACH study43 did not
include improving family carers’ grief; therefore,
baseline anticipatory grief scores were not measured
prior to the intervention. Baseline levels of any
outcome are an important determinant of the likely
impact of the intervention on the outcome; there-
fore, a major confounder was introduced to this
study. Further, programs varied at each of the six
sites, and complex analyses were required to esti-
mate the impact of aspects of the REACH Program
on normal and complicated grief. Despite these
limitations, findings from the study indicate that
four of the 12 intervention components (caregiver
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SYSTEMATIC REVIEW S. Wilson et al.
knowledge, caregiver skills, caregiver affect and
care recipient knowledge) delivered while the care
recipients were alive may have a positive association
with normal grief reactions. Further, three com-
ponents (caregiver skills, caregiver behavior and
care recipient behavior) may have associations with
complicated grief. There were associated decreases
in grief for every hour increase of each of theseparticular intervention components. However, the
ideal duration of the programs to maximize benefit
was not established.
Teaching cognitive skills to carers was associated
with reductions in both normal and complicated
grief in family carers. When supplemented with
information and emotional support, there was a
further reduction in normal grief symptoms. Teach-
ing cognitive skills to carers in conjunction with
behaviorally oriented interventions intended to
improve the wellbeing of the caregiver and care
recipient was associated with the greatest reduction
in symptoms of complicated grief. As the particular
program components classified as caregiver skills
were associated with decreases in both normal
and complicated grief, further work looking at care-
giver skills and which skills in particular should be
considered for both clinical and economic benefits
is warranted.
The ‘‘Easing the Way’’ and ‘‘Chronic Grief Man-
agement’’ interventions were scientifically developed
based on theories and knowledge of grief. Further,
the two programs were constructed to match items
and domains contributing to the validated grief
evaluation instruments.20,44 All of the interventions
were multifaceted with the hope of also reducing
other mental and physical health effects associated
with family carers of people with dementia such as
depression,20,43,44 guilt,44 anxiety,20 caregiver bur-
den,43 or to increase knowledge43,44 and self-effi-
cacy20 among others, and benefits were indicated for
some of these outcomes. It is unclear which com-
ponents of each multifaceted intervention could be
attributed to the effects on grief or other outcomes
measured. Further, the two programs targeting
anticipatory grief were evaluated as being feasible
for family carers. If altering the intervention pro-
grams to strengthen the areas targeted at grief was
considered, the possible benefits have to be con-
sidered in light of the other health effects that were
measured and the impact on carers’ burden which
has been recognized as detrimental.22-25
JBI Database of Systematic Reviews and Implementation Reports
©2017 Joanna Briggs Institute. Unauthorize
Predictors of normal and complicated grief in
family carers of people living with dementia were
identified in a previous systematic review as being a
spouse carer or having depression before the death of
the person with dementia.12 None of the interven-
tions included in this current systematic review tar-
geted family carers who were in these risk groups;
however, investigators of the REACH study con-
sidered depression as a confounding variable during
analysis. Interventions targeting these risk groups
may show greater benefit than when interventions
are provided universally.
Other systematic reviews have reported the effec-
tiveness of interventions on carers’ depression,22-25
anxiety,22,25 quality of life22,24 and self-efficacy.22,23
However, the effects or impact on any aspects of
grief or bereavement were not evaluated when
these interventions were provided. Interventions
that are currently being implemented should be
evaluated for their effect on grief and bereavement
of family carers.
Although the instruments used to measure grief
required self-report responses, a strength of the three
studies was that instruments were validated in the
contexts and have been widely used to measure the
construct of grief in its various forms.
A limitation of the synthesis of the three studies
included in this systematic review is that all were
undertaken in the US, with predominantly Cauca-
sian, female family carers, therefore limiting the
generalizability of the findings. Careful consider-
ation is required relating to healthcare systems
and cultural groups when implementing interven-
tions based on the findings of this systematic review
in other settings.
Conclusion
There is little evidence upon which to base practice
with regard to interventions for any aspects of grief
in family carers of people with dementia at present.
As both studies targeting anticipatory grief were
pilot studies and had small sample sizes, and the
study evaluating grief following the death of the care
recipient did not have baseline measures, it is diffi-
cult to draw conclusions about the impact of
the interventions.
However, as there is a lack of any other, higher level
evidence, findings suggest that different interventions
might be warranted depending on a family carer’s
unique clinical presentation and combination of risk
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SYSTEMATIC REVIEW S. Wilson et al.
factors.As family carersof people living withdementia
have many needs, the intervention has to be multi-
faceted while not increasing family carer burden.
Cognitive skills training provided while the per-
son with dementia is alive may positively impact
normal grief in family carers and complicated
grief following the death of the care recipient.
When the cognitive skills training is provided in
conjunction with behaviorally oriented interven-
tions that improve the wellbeing of the carer and
care recipient, the symptoms of complicated may
be reduced.
Implications for practice
While there is scant evidence demonstrating the
effectiveness of psychosocial interventions on the
perceived grief of family carers of a person with
dementia, the number of people with dementia is
rising, and there is a pressing need to assist family
carers, the following psychosocial interventions
delivered during the lifetime of the care recipient
should be considered until higher levels of evidence
are available:
�
JBI
©
Providing family carers with cognitive skills to
enable them to care for the person living with
dementia. Interventions aimed at providing fam-
ily carers with skills to enable them to care for the
person with dementia were associated with
improved perceived normal grief and compli-
cated grief scores (Grade B recommendation).48
�
 Combining cognitive skills training to family
carers with information and emotional support
may reduce normal grief (Grade B recommen-
dation).48
�
 Combining cognitive skills training to family
carers with behaviorally oriented interventions
targeted toward improving the wellbeing of the
caregiver and care recipient may reduce compli-
cated grief (Grade B recommendation).48
�
 Providing psychosocial interventions to spouse
carers and family carers with depression or those
at greatest risk of depression, as they have been
identified at greatest risk of complicated grief
(Grade B recommendation).48
Implications for research
As there is very little evidence for the effectiveness of
psychosocial interventions for grief in family carers
of people with dementia, it is recommended that
research initially needs to focus on:
Database of Systematic Reviews and Implementation Reports
2017 Joanna Briggs Institute. Unauthorize
�
d r
Evaluating family carers’ grief responses to psy-
chosocial programs currently being offered. Psy-
chosocial interventions are being implemented,
and various health outcomes of family carers and
care recipients are being measured. Include where
possible, measures of anticipatory, normal and
complicated grief to ascertain the effectiveness of
the programs already established.
�
 Measuring family carers’ grief for a longer time
post-intervention and following the death of the
care recipient as each intervention showed
promise but evaluations following 12 months
were not reported.
�
 Measuring the effects on grief (bereavement) and
complicated grief of bereaved carers when the
interventions are provided following the death of
the care recipient. Although interventions intro-
duced earlier in the trajectory may be beneficial,
no trials were found in this area.
�
 Testing of individual components of the multi-
component interventions for effect as it is cur-
rently unclear which components contribute to
aspects of grief that decreased.
�
 Capturing family carers’ responses across the
trajectory of living with a person withdementia
through a longitudinal study. Family carers’ sup-
port needs alter over time and throughout
the trajectory.
Acknowledgements
The authors would like to thank Ms Terena Solo-
mon, BA, GDLibSc, for her valuable contribution to
the literature search, retrieving documents and
establishing the reference manager. This review
was funded by the Dementia Collaborative Research
Centre: Consumers and Carers, Queensland Univer-
sity of Technology, Australia. We acknowledge the
contribution of the Alzheimer’s Australia Consumer
Dementia Research Network in the determination of
the importance of this topic to the lives of carers and
thus funding of this review.
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http://joannabriggs.org/research/registered_titles.aspx
http://joannabriggs.org/research/registered_titles.aspx
Appendix I: Search strategy
Medline search strategy – 111 results
Search: September 9, 2016
Database: Ovid MEDLINE(R) 1946 to Present with Daily Update
1. Dementia/(39765)
2. Dementia, vascular/(4205)
3. Alzheimer disease/(73852)
4. Frontotemporal dementia/(1333)
5. (Vascular dementia or mixed dementia or Lewy Body or frontal lobe or Alzheimer�).mp. [mp ¼ title,
abstract, original title, name of substance word, subject heading word, keyword heading word, protocol
supplementary concept word, rare disease supplementary concept word, unique identifier] (139740)
6. 1 or 2 or 3 or 4 or 5 (168818)
7. Caregivers/(23973)
8. (Carer� or caregiver� or spouse or family caregiver� or partner� or wife or wives or husband� or child�).mp.
[mp ¼ title, abstract, original title, name of substance word, subject heading word, keyword heading word,
protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
(2107557)
9. 7 or 8 (2107557)
10. Bereavement/(4249)
11. Grief/(7542)
12. (Caregiver burden or anticipatory mourning or anticipatory grief or caregiver grief or complicated
grief or prolonged grief or maladaptive grief or chronic grief or palliative or palliation or mental health).mp.
[mp ¼ title, abstract, original title, name of substance word, subject heading word, keyword heading
word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier]
(184649)
13. 10 or 11 or 12 (193990)
14. Social support/(55347)
15. Counseling/(29448)
16. (Blended model or Caregiver Grief Intervention Model or Dementia Caregiver Grief Model or Easing the
Way or model of grief care or psychosocial intervention� or program� or person-centered care or support
group or counseling or self-help group or widow to widow program or bereavement service�).mp. [mp ¼
title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol
supplementary concept word, rare disease supplementary concept word, unique identifier] (739205)
17. 14 or 15 or 16 (783123)
18. 6 and 9 and 13 and 17 (336)
19. From 18 keep 1–336 (336)
20. Limit 19 to (English language and yr ¼ ‘‘1995-Current’’) (290)
21. (Quantitative or quantitative stud� or randomized controlled trial� or non-randomized controlled trial�
or experimental or quasi-experimental or observational study or case-control or cohort or descriptive or case
series or cross sectional).mp. [mp ¼ title, abstract, original title, name of substance word, subject heading
word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept
word, unique identifier] (2619759)
22. 20 and 21 (111)
23. From 22 keep 1–111 (111)
SYSTEMATIC REVIEW S. Wilson et al.
JBI Database of Systematic Reviews and Implementation Reports � 2017 THE JOANNA BRIGGS INSTITUTE 825
©2017 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.
CINAHL search strategy – 77 results
From s23 27 articles were saved to Endnote.
Search: September 9, 2016
No. Query Limiters/expanders Last run via Results
S23 S18 AND S22 Limiters – Exclude
MEDLINE records;
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
77
S22 S19 OR S21 Search modes – Boo-lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
710,608
S21 Quantitative OR quantitat-
ive study OR randomized
controlled trial OR non-
randomized controlled trial
OR experimental OR quasi-
experimental OR observa-
tional study OR case-control
OR cohort OR descriptive
OR case series OR cross
sectional
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
691,988
S20 S18 AND S19 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
13
S19 (MH ‘‘Randomized Con-
trolled Trials’’)
Limiters – Published
Date: January 1, 1995
to December 31, 2015;
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
38,481
S18 S11 AND S15 Limiters – Published
Date: January 1, 1995
to December 31, 2015;
Narrow by Language:
– English Search
modes – Boolean/
Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
487
SYSTEMATIC REVIEW S. Wilson et al.
JBI Database of Systematic Reviews and Implementation Reports � 2017 THE JOANNA BRIGGS INSTITUTE 826
©2017 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.
(Continued)
No. Query Limiters/expanders Last run via Results
S17 S11 AND S15 Limiters – Published
Date: January 1, 1995
to December 31, 2015;
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
501
S16 S11 AND S15 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
539
S15 S12 OR S13 OR S14 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases Search
Screen – Advanced Search
Database – CINAHL Plus
with Full Text
368,862
S14 ‘Blended model’ OR Care-
giver Grief Intervention
Model OR Dementia Care-
giver Grief Model OR ‘Eas-
ing the Way’ OR ‘model of
grief care’ OR psychosocial
intervention� OR program�
OR person-centered care
OR support group OR
counseling OR self-help
group OR widow to widow
program OR bereavement
service�
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
331,677
S13 (MH ‘‘Death Counseling’’) Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
304
S12 (MH ‘‘Support, Psychoso-
cial’’)
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
46,533
S11 S4 AND S7 AND S10 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
2463
SYSTEMATIC REVIEW S. Wilson et al.
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©2017 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.
(Continued)
No. Query Limiters/expanders Last run via Results
S10 S8 OR S9 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases Search
Screen – Advanced Search
Database – CINAHL Plus
with Full Text
128,816
S9 Caregiver burden OR
anticipatory mourning OR
anticipatory grief OR care-
giver grief OR complicated
grief OR prolonged grief
OR maladaptive grief OR
chronic grief OR palliative
OR palliation OR mental
health
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
120,592
S8 (MH ‘‘Grief’’) OR (MH
‘‘Complicated Grief’’) OR
(MH ‘‘Anticipatory Griev-
ing’’) OR (MH ‘‘Bereave-
ment’’)
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
10,071
S7 S5 OR S6 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
575,170
S6 Carer� OR caregiver� OR
spouse OR family caregiver�
OR partner� OR wife OR
wives OR husband� OR
child� OR son OR daughter
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
575,170
S5 (MH ‘‘Caregivers’’) OR
(MH ‘‘Caregiver Burden’’)
OR (MH ‘‘Caregiver Sup-
port’’)
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
27,253
S4 S1 OR S2 OR S3 Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
52,137
S3 Vascular dementia OR
mixed dementia OR Lewy
Body OR frontal lobe OR
Alzheimer�
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
30,393
SYSTEMATIC REVIEW S. Wilson et al.
JBI Database of Systematic Reviews and Implementation Reports � 2017 THE JOANNA BRIGGS INSTITUTE 828
©2017 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.
(Continued)
No. Query Limiters/expanders Last run via Results
S2 Alzheimer disease Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
2608
S1 (MH ‘‘Dementia’’) OR (MH
‘‘Frontotemporal Demen-
tia’’) OR (MH ‘‘Dementia,
Vascular’’)
Search modes – Boo-
lean/Phrase
Interface – EBSCOhost
Research Databases; Search
Screen – Advanced Search;
Database – CINAHL Plus
with Full Text
26,964
SYSTEMATIC REVIEW S. Wilson et al.
JBI Database of Systematic Reviews and Implementation Reports � 2017 THE JOANNA BRIGGS INSTITUTE 829
©2017 Joanna Briggs Institute. Unauthorized reproduction of this article is prohibited.
Appendix II: Eligibility screening form40
Assessment of study for eligibility: grief in caregivers of people with dementia
Title:
Author(s):
Year:
Criteria Satisfied Design & comments
Type of studies
Quantitative studies including, but not limited to:
� experimental and epidemiological study designs including
randomized controlled trials,
� non-randomized controlled trials,
� quasi-experimental studies, before and after studies,
� prospective and retrospective cohort studies,
� case-control studies and
� analytical cross-sectional studies for inclusion.
Consider descriptive epidemiological study designs including case
series, individual case reports and descriptive cross-sectional studies
for inclusion
Type of participants
Inclusion
� family carers of older persons (>65 years) with dementia
� no age limits on participants and family carers
� includes spouses, adult children, siblings, friends and neighbors
who provide unpaid personal care, support and assistance
� definition of dementia will not be restricted to any specific
type, stage or degree of severity
� included regardless of whether a clinical diagnosis was reported.
Years 1995þ
English only
Exclusions:
� studies of family carers of people living with early onset
dementia
� focus only on mild cognitive impairment without specifying
the main focus on dementia
� studies of people who have a dual diagnosis will be excluded
� paid and unpaid carers will be excluded unless the family
carer data can be extracted separately.
Intervention
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(Continued)
Criteria Satisfied