804 Journal of Pain and Symptom Management Vol. 53 No.

4 April 2017

Review Article

Assessing Palliative Care Content in Dementia Care

Guidelines: A Systematic Review
Pamela Durepos, RN, MSc, Abigail Wickson-Griffiths, RN, PhD, Afeez Abiola Hazzan, PhD,
Sharon Kaasalainen, RN, PhD, Vasilia Vastis, MB, BCh, BAO, Lisa Battistella, MLIS, and
Alexandra Papaioannou, MD, FRCPC, FACP
School of Nursing (P.D., S.K.), McMaster University, Hamilton; Faculty of Nursing (A.W.-G.), University of Regina, Regina; Royal College of
Surgeons (V.V.), Dublin, Ireland; Hamilton Health Sciences (A.A.H., L.B., A.P.), Hamilton, Canada; and Geriatric Education and
Research in Aging Sciences (GERAS) Centre at McMaster University and Hamilton Health Sciences/St. Peter’s Hospital (A.A.H., L.B.,
A.P.), Hamilton, Canada

Abstract
Context. Families of persons with dementia continue to report unmet needs during end of life (EOL). Strategies to
improve care and quality of life for persons with dementia include development of clinical practice guidelines (CPGs) and an
integrative palliative approach.
Objectives. We aimed to assess palliative care content in dementia CPGs to identify the presence or limitations of
recommendations and discussion pertaining to common issues or domains affected by illness as described by the Canadian
Hospice Palliative Care Association ‘‘Square of Care.’’
Design. A systematic review of databases and gray literature was conducted for recent CPGs. Guidelines meeting inclusion
criteria were evaluated using the Appraisal of Guidelines for Research and Evaluation II instrument. Quality CPGs were
analyzed through organizational template analysis using illness domains described by the ‘‘Canadian Hospice Palliative Care
Association Model.’’ The study protocol is registered at PROSPERO (CRD 42015025369).
Results. Eleven CPGs were selected and analyzed from 3779 citations. Nine guidelines demonstrated the maximum level of
content regarding physical, psychological, and social care. Conversely, spiritual care was either absent (three) or minimal
(three) in CPGs. Six CPGs did not address loss or grief, and seven CPGs did not address or had minimal content regarding
EOL care.
Conclusions. The lack of content surrounding grief represents a gap for this population at high risk for complicated grief
and chronic sorrow. Results of this review require attention by CPG developers and researchers to develop evidence-based
recommendations surrounding spiritual care, EOL, and grief. J Pain Symptom Manage 2017;53:804e813. Crown
Copyright Ó 2017 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine. All rights reserved. This is
an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

Key Words
Palliative care, dementia, Alzheimer’s, guidelines, systematic review

Introduction are living with dementia worldwide. This number will

rise to 74.7 million by 2030 reaching 131.5 million by
Dementia is a progressive syndrome commonly
2050.2 Dementia is characterized by an uncertain
related to chronic neurodegenerative, life-limiting dis-
journey of cognitive and functional decline distinct
eases such as Alzheimer’s disease.1 Prevalence is
from other diseases. Physical, psychological, and
increasing, and it is estimated that 46.8 million people

Address correspondence to: Pamela Durepos, RN, MSc, Faculty Accepted for publication: October 30, 2016.
of Health Sciences, McMaster University, 1280 Main Street
West, Hamilton, ON L8S 4K1, Canada. E-mail: lapospm@
mcmaster.ca
Crown Copyright Ó 2017 Published by Elsevier Inc. on behalf of 0885-3924/$ - see front matter
American Academy of Hospice and Palliative Medicine. All rights http://dx.doi.org/10.1016/j.jpainsymman.2016.10.368
reserved. This is an open access article under the CC BY-NC-ND
license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Vol. 53 No. 4 April 2017 Palliative Content in Dementia Guidelines
behavioral symptoms increase during the advanced
stages of dementia and can negatively influence family
and patient experiences during end of life (EOL).3
Palliative care aims to reduce and prevent suffering
thereby improving quality of life.4 Although tradi-
tionally provided during EOL, persons and families
coping with chronic diseases such as dementia can
experience comfort and support, smoother transi-
tions between levels of care and improved quality of
life from early introduction of palliative care inter-
ventions.3 Dementia is difficult to prognosticate
which creates a barrier to the provision and coordina-
tion of palliative care services at EOL.1,3 Dementia is
also underrecognized as a chronic or terminal illness,
which may diminish health care providers decision to
provide or promote palliative care interventions.1
The concept of a palliative approach to care de-
scribes an integrative model, which can guide the
care of persons at any stage of chronic illness, dispel-
ling the myth that palliative care is only for EOL.5,6
A palliative approach to care integrates key elements
of palliative care including the following: open
communication regarding illness prognosis and trajec-
tory; advance care planning; psychosocial and spiritual
support; and pain or symptom management. Elements
are integrated with the usual care persons are
receiving across settings at all time points of illness.5
The national framework ‘‘The Way Forward’’ devel-
oped by the Canadian Hospice Palliative Care Associa-
tion (CHPCA) in collaboration with the End-of-Life
Care Coalition of Canada and the Government of Can-
ada delineates strategies to integrate a palliative
approach into all health care services and settings.5
In combination with an integrative approach, the
CHPCA ‘‘Square of Care Model to Guide Palliative
Care’’ asks clinicians to assess, manage, and plan for
eight domains of issues: disease management, phys-
ical, social, practical, psychological, spiritual, EOL,
and grief or loss needs through all stages of illness.6
For persons with dementia whom can experience
lengthy, debilitating symptoms in conjunction with co-
morbidities, an integrative palliative approach com-
prises one strategy to improve quality of life and
death.5,6
Clinical practice guidelines (CPGs) comprise
another strategy to improve quality and consistency
of care by summarizing and presenting evidence-
based recommendations for clinicians.7 While
consensus is building among experts that palliative
care is essential for persons with dementia, it is un-
clear if palliative care content is integrated in current
CPGs for management of dementia. Furthermore,
although CPGs exclusive to EOL or palliative care
offer valuable recommendations for persons with de-
mentia, clinicians may not refer to these guidelines
until death is imminent, negating the needs of
805
patients throughout the disease trajectory. The
objective of this systematic review therefore is to
assess and quantify the palliative care content within
current international dementia care guidelines to in-
crease awareness within clinicians and identify poten-
tial need for revision. Limitations in content may
identify research priorities for evidence-based
interventions.
Methods
Search Strategy and Selection Criteria
The procedure for this review was informed by the
Preferred Reporting Items for Systematic Review and
Meta-Analyses standards as well as previous systematic
reviews of CPGs.8e10 The protocol for this systematic
review is registered on PROSPERO (CRD 420
15025369). A systematic literature search guided by
evidenced-based search strategies was conducted in
May 2015 by a master’s prepared librarian. The search
targeted CPGs describing the management of demen-
tia in four databases including the following: CI-
NAHL, EMBASE, Medline, and PsychInfo using
comprehensive search terms such as ‘‘dementia’’ or
‘‘Alzheimer’s disease’’ and ‘‘practice guideline’’ or
‘‘clinical protocol’’ or ‘‘consensus development’’.11
Full search terms are included with the study protocol.
Inclusion criteria of guidelines consisted of the
following:
1. Treatment/management for Alzheimer’s disease,
frontotemporal, vascular, or Lewy body dementia.
2. Published or updated, in whole or in part in 2008
or later.
3. Multifaceted practice recommendations.
4. Affiliation with a professional society, govern-
ment or nongovernment organization, or
association.
5. Method of systematic development described.
Alternatively guidelines were excluded due to
following criteria:
6. Treatment/management for mild cognitive
impairment, Korsakoff’s, HIV dementia, intellec-
tual disability, or Creutzfeldt-Jakob’s dementia.
7. Published before 2008 without update.
8. Exclusive recommendations regarding one prac-
tice or symptom (e.g., behaviors, palliation,
pain, diagnosis).
9. Exclusive recommendations for a single disci-
pline (e.g., nursing).
10. Guideline was not associated with a professional,
national/governmental organization, society, or
association.
11. Method of recommendation development
(including literature review) was not described.
806 Durepos et al. Vol. 53 No. 4 April 2017

The literature search was limited to articles pub-
lished in English between 2008 and May 2015 to cap-
ture CPGs currently in use. Broad management
guidelines as opposed to specialized CPGs for topics
such as pain, palliative care, or medications were
selected for review to permit assessment of palliative
care content integrated within general guidelines.
The majority of organization CPG development man-
uals cite a time frame of between two and five years
for revision.12 For CPGs classified as an update of a
previous version, the original guideline was retrieved
and included during data extraction.
A search of gray literature using the same terms and
screening criteria was conducted online using the
search engine ‘‘Google Scholar.’’ The websites of local,
national, and international organizations associated
with neurology or cognitive impairment such as the
Alzheimer Society of Canada, European Federation
of Neurological Sciences, and the American Geriatric
Society were scrutinized and organizations contacted
via telephone or e-mail for pertinent information
Identification
regarding guidelines. Seven CPG catalogs were
searched including the following: National Guideline
Clearinghouse, International Guideline Network, the
Canadian Medical Association InfoBase, Database of
Abstracts of Reviews of Effects, Clinical Guideline
Portal Australia, Scottish Intercollegiate Guideline
Network, and the New Zealand Guidelines Group.
Reference lists of relevant articles, including past sys-
tematic reviews of dementia care CPGs, were scruti-
nized, and guidelines retrieved via hand searches.
A team of five researchers used DistillerSR software
(systematic review software developed by evidence
partners.com) for article screening.13 Titles and ab-
stracts were screened by two independent reviewers,
with relevant articles selected for full-text review. Dis-
agreements concerning inclusion or exclusion of CPGs
were resolved through discussion and referral to a third
reviewer following procedures and criteria outlined
in the protocol. A Preferred Reporting Items for System-
atic Review and Meta-Analyses flowchart demonstrating
the search and study process is presented in Fig. 1.14

Records identified through journal Additional records identified

database searching through other sources
(n = 3801) (n = 17)

Records after duplicates removed

(n = 2490)
Screening

Records excluded
Records screened (n = 2381)
(n = 2490)

CPGs excluded
Dementia Care CPGs (n = 94)
(n = 109) Not Multi-faceted
Eligibility

(n = 68)
Not Multi-
disciplinary
(n = 5)
CPGs included in AGREE II No Association
Quality Assessment
(n = 6)
(n = 15)
No Described
Systematic
Included

Development
CPGs included in analysis (n = 15)
(n = 11)

Fig. 1. PRISMA flowchart illustrating guideline search and selection. AGREE II ¼ Appraisal of Guidelines Research and
Evaluation II; CPG ¼ clinical practice guideline; PRISMA ¼ Preferred Reporting Items for Systematic Review and Meta-
Analyses.
Vol. 53 No. 4 April 2017 Palliative Content in Dementia Guidelines
Quality Assessment
The quality of CPGs meeting inclusion criteria was
assessed using the Appraisal of Guidelines for Research
and Evaluation II (AGREE II) instrument, which cri-
tiques guidelines based on eight domains including
scope and purpose, stakeholder involvement, rigor of
development, clarity of presentation, applicability,
and editorial independence and allows reviewers to
impart an overall rating between 0 and 7.14 Reviewers
used an online tutorial for training and completed
two practice assessments reviewed by the principal
investigator to ensure interrater agreement and reli-
ability. Guidelines achieving 60% or greater in the
rigor of development domain and an overall assess-
ment of four or greater by two independent reviewers
were selected for data extraction and analysis. High
AGREE II scores in the domain of rigor ensured
CPGs had undergone rigorous development with rec-
ommendations graded according to quality evidence.
Data Extraction and Analysis
The CHPCA ‘‘Square of Care’’ model www.chpca.net
provided a holistic framework for organizational tem-
plate analysis of CPGs.6,15 This method of content anal-
ysis allowed data to be coded, extracted, and appraised
in comparison to a preexisting framework (i.e., Square
of Care) guiding palliative care. Two reviewers indepen-
dently coded the text of included CPGs (i.e., recommen-
dations or discussion points) and supporting documents
according to the model’s eight domains/issues (disease
management, physical, psychological, social, spiritual,
practical, EOL, grief/loss) and subcategories, classifying
content as present or absent with excerpts as proof.
Additional coding according to the process of care pro-
vision further described in the ‘‘Square of Care’’ (i.e.,
assessment, information sharing, decision making, care
planning, care delivery, and confirmation) was beyond
the scope of this review. Data overlapping between mul-
tiple domains was extracted to the single domain
perceived as most relevant.
Results were compared, and disagreements were
resolved through discussion. The principal author
then performed frequency counts of content,6,15
grading palliative care content within the eight CPG
domains as absent (0% subcategories addressed), min-
imal (#50% subcategories addressed), moderate
($50% subcategories addressed), or maximum
(100% of subcategories addressed). A second author
reviewed the analysis to ensure accuracy. Master
themes were identified across the data.
Results
The literature search of databases and gray literature
resulted in 2490 articles being screened after
807
duplicates were removed. During initial screening
1071 were determined not to be CPGs, 1293 were not
aimed at dementia, and 17 additional articles did not
fit inclusion criteria (e.g., wrong date, same CPG).
The authors found that many CPGs addressed four
main diseases associated with dementia within one sin-
gular guideline, whereas Korsakoff’s, HIV, Creutzfeldt-
Jakob, intellectual disability and Parkinson’s were often
separated within the literature, compelling exclusion
from this study. Forty-two guidelines exclusively
focused solely on the prevention, diagnosis, or evalua-
tion of dementia, and were excluded. Singular, special-
ized management of dementia (e.g., pharmacology,
palliative care, behavioral symptoms, etc.) occurred in
26 CPGs, including one CPG exclusive to pain manage-
ment. Therefore, all specialized CPGs such as the Euro-
pean Association of Palliative Care’s White Paper did
not describe ‘‘multifaceted, broad management’’ and
were excluded.3 Additionally, five CPGs were not multi-
disciplinary (e.g., specific to nursing, occupational
therapy, etc.) decreasing their applicability to a variety
of clinicians resulting in their exclusion. After three
levels of screening, a total of 15 CPGs were selected
for appraisal using the AGREE II instrument. Of these,
11 CPGs demonstrated $60% of rigor in development
and were rated as four or greater (out of a possible total
score of seven) by two assessors. These guidelines were
subsequently analyzed (Table 1).16e36
Overall, high-level results of CPGs lacking palliative
care content in specific domains are summarized in
Table 2. CPG organizational template analyses are
available as a supplemental appendix from the author.
Eleven total CPGs were analyzed with nine CPGs
demonstrating maximum content regarding disease
management, physical, psychological, or social care,
highlighting the areas of focus within dementia care
guidelines.16e19,26,27,29e32 Alternatively, six CPGs did
not include (i.e., absent) or contained minimal con-
tent on spiritual care16,20e25,28,29,31,32 and seven CPGs
did not include or had minimal content on EOL
care.16,19e25,28e31 The least amount of palliative care
content was noted regarding loss and grief, evidenced
by a complete lack of content in six CPGs.16,19e26,28,32 A
brief description of content and examples of themes
for each domain follows this overview.
Disease Management
The primary domain of disease management in-
cludes actions and recommendations related to
screening, assessment, diagnosis, disclosure, moni-
toring of primary disease, comorbidities, and adverse
events.6 All CPGs held maximum content related to
disease management demonstrating large focus in
this domain. Notably, all CPGs discussed importance
of differentiating between delirium and dementia.
Careful management of a person’s comorbidities,
808 Durepos et al. Vol. 53 No. 4 April 2017

Table 1
CPG Quality Appraisal Using AGREE II Instrument
Appraisal Domains

Scope and Stakeholder Rigor of Clarity of Editorial

Guideline Authors Purpose Involvement Development Presentation Applicability Independence

Included
American Medical Directors 78% 67% 66% 75% 73% 4%
Association16
American Psychiatric 61% 56% 68% 75% 42% 38%
Association17,18
British Columbia Ministry of 78% 70% 62% 72% 50% 64%
Health19
Canadian Consensus 75% 75% 67% 86% 63% 67%
Conference on Diagnosis and
Treatment of Dementia20e25
California Workgroup on 67% 94% 72% 83% 60% 0%
Guideline’s for Alzheimer’s
Disease Management26
Catalonia, Spain Ministry of 92% 89% 74% 83% 67% 88%
Health (AQuAS)27
European Federation 80% 52% 60% 91% 16% 94%
Neurological Sciencese
Dementia28
Malaysia Ministry of Health29 94% 73% 83% 54% 88% 100%
National Institute for Health 67% 81% 90% 72% 69% 67%
and Clinical Excellence30
Queensland University of 61% 67% 67% 89% 69% 63%
Technology31
Singapore Ministry of Health32 58% 72% 69% 75% 75% 8%
Excluded
American Geriatric Society33 64% 67% 43% 72% 27% 0%
Brazilian Academy of 56% 28% 55% 56% 35% 25%
Neurology34
National Board of Health 72% 72% 48% 61% 52% 8%
(DK)35
Tuscany Health Council36 72% 58% 41% 86% 27% 58%
CPG ¼ clinical practice guideline; AGREE II ¼ Appraisal of Guidelines Research and Evaluation II; AQuAS ¼ Agencia de Qualitat.
Included CPGs demonstrated greater than 60% in the category of rigor and $4 overall rating.

potential influence on symptoms of dementia, and Physical/Cognitive Function

overall function was also addressed in all guidelines. Assessment and care for physical issues associated
Inclusion of the person with dementia’s family or with illness focuses on symptom management, mainte-
informal caregiver during assessment and monitoring nance of body system health and cognitive function.6
of the disease, as well as sensitivity during disclosure of All CPGs demonstrated maximum content in this
diagnosis, was also recommended.20e25 area, with recommendations for pharmacologic
Table 2
CPGs With Absent or Minimal Content in Specific Domains
‘‘Square of Care’’ Domain

Disease Physical/ End of

CPG Management Cognitive Psychological Social Practical Spiritual Life Loss/Grief

AMDA16 þ þ þ
APA17,18 þ
BC19 þ þ
CCC20e25 þ þ þ
CWG26
AQuAS27
EFNS-D28 þ þ þ þ þ þ
MMOH29 þ þ
NICE30 þ
QUT31 þ þ
SMOH32 þ þ
CPG ¼ clinical practice guideline; AMDA ¼ American Medical Directors Association; APA ¼ American Psychiatric Association; BC ¼ British Columbia Ministry of
Health; CCC ¼ Canadian Consensus Conference on Diagnosis and Treatment of Dementia; CWG ¼ California Workgroup on Guideline’s for Alzheimer’s Disease
Management; AQuAS ¼ Agencia de Qualitat; EFNS-D ¼ European Federation Neurological ScienceseDementia; MMOH ¼ Malaysia Ministry of Health; NICE ¼
National Institute for Health and Clinical Excellence; QUT ¼ Queensland University of Technology.
þIndicates present.
Vol. 53 No. 4 April 2017 Palliative Content in Dementia Guidelines
treatment for dementia comprising a large amount of
content.31 Treatment of aggression and agitation with
antipsychotics was recommended if persons were at
risk of harm due to the behaviors, and if other treat-
ment modalities failed.16 Interventions for symptoms
such as wandering were described including the provi-
sion of access to safe, large supervised walking areas
and registration with home safety registries such as
the Alzheimer Society.17e18,20e25
Pain management for persons with dementia was
discussed in 10 guidelines. Nonverbal assessment tools
such as the PACSLAC (SMOH) and pain management
strategies such as the WHO analgesic ladder were rec-
ommended.26,27,31,32 Nine CPGs discussed tube
feeding for nutrition and hydration,16e18,20e27,29e32
and four CPGs reported evidence against tube feeding
for people with advanced dementia.26,27,30,31
Psychological
Psychological issues affected by illness include mood,
sleep and behaviors, self-esteem, independence, or
sexuality.6 All CPGs contained maximum content
with discussion and recommendations regarding
assessment and treatment of depression and psychoso-
cial interventions for challenging behaviors with associ-
ated levels of evidence. Interventions described
included music therapy, physical activity, validation
therapy, multisensory, massage, aromatherapy, and
light therapy.29 In contrast, only five CPGs discussed is-
sues of sexuality and intimacy,16,27,30e32 and one CPG
described management strategies for challenging sex-
ual behaviors.16
Social
A person’s social domain includes their cultural
values, environment, financial and legal resources, re-
lationships, family support and also includes activities
of advance care planning.6 Nearly all CPGs had
maximum content in this area including recommen-
dations for assessment of family coping, support, and
referral to cited community resources.16,19e27,29e32
Early initiation of advance care planning is recom-
mended to allow persons with dementia to partake
in decision making.16e27,29e31 However, few CPGs pro-
vided supplemental resources to aid clinicians with the
process of advance care planning. The provision of
culturally sensitive care was discussed in most CPGs
although specific guidance was limited.16,19,20e26,30,31
One guideline in particular did describe the specific
needs of aboriginal populations31 and another
described factors to be included in a cultural
assessment.26
Practical
Practical issues affected by illness include activities of
daily living, transportation, supportive programs, and
809
guidance surrounding transitions into long-term care
homes.6 Practical content was moderate to maximum
within all guidelines and included functional assess-
ment tools, as well as tips to aid families and persons
with dementia with activities of daily life such as the
use of diaries.19 Community day programs were also
recommended to decrease social isolation, provide
stimulation and relief for family caregivers.16,30
Some guidelines discussed the relationship between
challenging behaviors and admittance of persons to
long-term care homes20e25,29,30 whereas one described
valuable indicators of a person’s inability to live alone
including falls, hospitalizations, and dehydration.20e25
Spiritual
Spirituality is individually defined and may include
persons’ perception of existential and transcendental
reality, values and meaning linked to experiences, reli-
gion, or rituals.6 Three CPGs neglected mention of
spiritual care altogether,28,31,32 whereas others advised
assessment of beliefs.17e19,27,29,30 Guidelines reported
evidence of a positive relationship between quality of
life, well-being, and spiritual practices. Clinicians
were encouraged to promote spiritual or religious
practices for families and persons with
dementia.16e18,30
End of Life
EOL issues include planned giving and life closure,
preparation for expected death through discussion of
duration or institution of treatments, peri-death care
of family, and hospice care.6 Seven CPGs had minimal
content or did not address EOL care.16,19e25,28e31 It
was recommended that clinicians discuss with persons
and families the limitations of treatment for dementia
and need for continual evaluation of perceived func-
tional benefits compared to risks.16e25,30 Treatment
scope and duration should also correlate with existing
advanced care plans and directives.16e25 Most guide-
lines discussed the discontinuation of pharmacologic
therapy during EOL, although little guidance for spe-
cific timing of withdrawal was offered. Only one CPG
reported that most families perceived treatments or
medications as appropriate if duration of effects is
six months or longer.30 Multiple CPGs recommended
clinicians assess need for palliative care services,
particularly during EOL.29e31 However, criteria or trig-
gers for referral to specialists or hospice was lacking.
Apart from discussion of overall advance care plan-
ning, only one CPG specifically recommended deter-
mining a persons’ preferred place of death.30
Loss and Grief
The domain of loss and grief may include acute,
chronic, and anticipatory grief as well as bereavement
planning and mourning.6 Six CPGs did not address
810
loss and grief.16e18,20e26,28,32 Only on CPG contained
maximum content within this domain. Potential feel-
ings for grief and loss within persons and families
from the time of diagnosis through EOL were ad-
dressed by one guideline with possible need for
referral to specialist support both pre- and post-
bereavement.31 Overall discussion and recommenda-
tions regarding EOL care, spiritual care, and loss
and grief were lacking in current, quality dementia
care guidelines.
Discussion
Palliative care interventions and services can pro-
vide essential comforts and ease suffering throughout
illness. Particularly at the critical stage of EOL, pallia-
tive care can decrease symptoms (e.g., pain, physical
stress, mental stress, and isolation) associated with
chronic diseases like dementia, improving quality of
life. The current review was conducted to assess and
quantify palliative care content integrated within cur-
rent international dementia care guidelines. With a
focus on four dementia types (Alzheimer’s disease,
Lewy body, vascular, and frontotemporal), findings
from this study are consistent with the literature,
which shows significant gaps and poor experiences
during EOL, especially among patients who are less
critically ill.37
Although there was coverage in the CPGs reviewed
for most of the domains in the ‘‘Square of Care’’
model, there was less attention to EOL care. Areas
that were missing included determining preferred
place of death, peri-death care, or family education
on what to expect as the condition of the person
with dementia declines, support for funeral planning,
and advice for life closure. When someone is dying or
near death, clinicians should help family members
prepare and cope with the eventual loss of their loved
one. Lack of discussion or recommendations sur-
rounding these issues is an important limitation within
current dementia care guidelines.
The CPGs included in this review contained several
recommendations regarding the social aspect of care
including the early initiation of advance care plan-
ning. Our findings showed that family members and
caregivers were frequently included and valued in
guidelines. For example, most of the CPGs discussed
sensitivity in disclosure, as well as family assessment
and referral to supports. The extensive coverage given
to family members’ needs was justified because of
their crucial role in the care of persons with demen-
tia, especially at EOL. Because of the progressive na-
ture of some forms of dementia, family members
devote greater amount of time and resources to their
loved ones as the disease advances.38 Family members
have extensive knowledge of the person with
Durepos et al. Vol. 53 No. 4 April 2017
dementia, assisting in care provision, assessment,
and monitoring and may be ideally suited to identify
persons at EOL, recognizing subtle signs of decline.
Alternatively, clinicians may be reliant on prognostic
tools not suited for dementia. If properly educated
regarding the disease trajectory, family members can
suggest the implementation of palliative care inter-
ventions when they perceive decline.3
Existing guidelines did not address grief and loss
among family members. Studies have shown that fam-
ily members of persons with dementia are at risk for
complicated grief and chronic sorrow.39 In a qualita-
tive study examining the dementia caregiving journey
from the perspectives of bereaved family caregivers,
the authors identified EOL and grief in bereavement
as key themes.40 Family caregivers have unique per-
spectives that should be harnessed to develop
evidence-based interventions, improving EOL and
bereavement care.
Furthermore, a previous study has shown that early
palliative care referral is related to the aggressiveness
of care at the EOL. In a retrospective cohort study
exploring the association between early palliative
care referrals, inpatient hospice utilization, and
aggressiveness of EOL care among 266 consecutive
cancer decedents, the authors found that the aggres-
siveness of EOL care was significantly lower in the
early referral group (1.91  0.59 vs. 2.14  0.78,
adjusted P < 0.001) compared to a control group.41
The study concluded that referral to palliative care ser-
vices was associated with more inpatient hospice utili-
zation and less aggressive EOL care. Introducing
palliative care earlier in the disease trajectory could
help prevent overly aggressive treatment, improving
comfort and quality of life for persons with dementia
and their families.
Another key finding of this review pertains to spiri-
tual care, which was absent or minimal within demen-
tia care CPGs. As this concept is individually defined,
clinicians need to become comfortable assessing peo-
ple’s beliefs and promote the use of spirituality to
enhance well-being.42 Many persons view existential
or religious beliefs as key factors that make life mean-
ingful and rely on spiritual beliefs to cope and guide
decisions at EOL. Although clinicians are not required
to be spiritual themselves, they are encouraged to
consider different avenues to include the spiritual
dimension of care, encouraging and promoting
practices.42
Finally, there was lack of content for psychological
issues such as sexuality and intimacy within the major-
ity of CPGs reviewed. Previous research has shown that
issues relating to the sexuality and intimacy of people
with dementia are often ignored in policy documents
and research studies.43 Clinicians are encouraged to
take meaningful steps to protect the rights of care
Vol. 53 No. 4 April 2017 Palliative Content in Dementia Guidelines
recipients as it pertains to sexuality. Clinicians should
encourage physical affection and intimacy among fam-
ily members. However, the dignity of others should be
protected in cases of challenging sexual behaviors.43
Overall, palliative care content was moderate to
maximum in most domains of the guidelines re-
viewed. However, EOL care, spirituality, and discussion
of loss or grief were notably minimal or absent. This is
consistent with research outlining gaps and unmet
needs of families and persons with dementia during
EOL.44 The present study shows a need for guidelines
that fully address and incorporate the eight domains
of palliative care (disease management, physical, so-
cial, practical, psychological, EOL, and grief or loss)
throughout the journey of care, and not solely at the
end of the continuum when needs are accumulated.
Future research should focus on development and
evaluation of evidence-based interventions pertaining
to EOL, grief, and spirituality for inclusion as recom-
mendations in CPGs.
Strengths and Limitations
The international scope of this review is a major
strength. By focusing on guidelines from around the
world, the generalizability or external validity of our
findings was enhanced. Utilization of the internation-
ally recognized and reliable AGREE II instrument for
CPG quality assessment was an additional methodo-
logical strength of this study. Independent raters at
all levels of screening and consensus building further
enhanced the reliability of the findings. The ‘‘Square
of Care Model’’ is also an internationally recognized,
comprehensive and translatable framework, which
lent itself well to organizational template analysis.
This study has a few limitations. Guideline analysis
did not assess the provision of care outlined by the
‘‘Square of Care’’ model. Some prominent guidelines
were identified that were not available in English
and exclusion of noneEnglish-language guidelines
may have introduced bias. Furthermore, quality assess-
ment was done by reviewing the description of
methods used in their guideline development. When
this information could not be attained because of
nonavailability from web sites or attempts to contact
guideline developers, such CPGs were awarded lower
rigor ratings, which may have resulted in their exclu-
sion. Also, although authors conducted a thorough
search within sources of gray literature, the multitude
of organizations internationally may have prevented
identification of additional quality CPGs.
Conclusion
In conclusion, this systematic review provides new
information regarding the quantity of current pallia-
tive care content within international dementia care
811
guidelines. With dementia prevalence rising and no
cure on the horizon, it is crucial that clinicians inte-
grate a palliative approach into their care. Guidelines
provide a valuable tool for clinician reference and
palliative content or recommendations pertaining to
each domain of the ‘‘Square of Care’’ can reduce the
suffering of patients and families at all stages of illness.
Guideline developers and researchers are challenged
with the results of this review to develop evidence-
based recommendations and CPG content regarding
spirituality, EOL, and loss or grief to increase palliative
care content improving the lives of persons with de-
mentia and their families.
Disclosures and Acknowledgments
This work was supported by the Canadian Frailty
Network (CFN) (grant numbers SIG2014-IS); the
Geriatric Education Research in Aging Sciences
Center (GERAS) McMaster University, Hamilton
Health Sciences at St. Peter’s Hospital; and Shalom
Village Nursing Home in Hamilton, Ontario through
student scholarships. The authors have no competing
interests to declare.
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