C International Psychogeriatric Association 2015
International Psychogeriatrics: page 1 of 11 doi:10.1017/S1041610215000150
An evaluation of palliative care contents in national dementia
strategies in reference to the European Association for
Palliative Care white paper
...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Miharu Nakanishi,1 Taeko Nakashima,2 Yumi Shindo,3 Yuki Miyamoto,4
Dianne Gove,5 Lukas Radbruch6,7 and Jenny T. van der Steen8
1
Mental Health and Nursing Research Team, Tokyo Metropolitan Institute of Medical Science, Setagaya-ku, Tokyo, 156-8506, Japan
Department of Economics, Rutgers University, the State University of New Jersey, Camden, NJ 08102, USA
3
Division of Research, Tokyo Dementia Care Research and Training Center, Suginami-ku, Tokyo, 168-0071, Japan
4
Department of Psychiatric Nursing, Graduate School of Medicine, the University of Tokyo, Bunkyo-ku, Tokyo, 113-0033, Japan
5
Alzheimer Europe, Luxembourg, L-1417, Luxembourg
6
Department of Palliative Medicine, University Hospital Bonn, Bonn, 53127, Germany
7
Palliative Care Centre, Malteser Hospital Bonn/Rhein-Sieg, Bonn, 53123, Germany
8
Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, 1081BT,
Amsterdam, the Netherlands
2
ABSTRACT
Background: Dementia involves a progressive decline in many functional areas. Policy and practice guidelines
should cover the entire course of the disease from early detection to the end-of-life. The present study aimed
to evaluate the contents of national dementia strategies with a focus on palliative care content.
Methods: We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries
were reviewed. Using open coding, the contents were compared to the domains and recommendations of the
palliative care in dementia white paper of the European Association for Palliative Care (EAPC).
Results: Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited
extent in three countries, a number of domains from the EAPC white paper were well represented, including
“person-centered care, communication, and shared decision making”; “continuity of care”; and “family care
and involvement.” Three countries that referred to palliative care did so explicitly, with two domains being well
represented: “education of the health care team”; and “societal and ethical issues.” The strategies all lacked
reference to the domain of “prognostication and timely recognition of dying” and to spiritual caregiving.
Conclusions: National dementia strategies cover part of the recent definition of palliative care in dementia,
although they do not frequently label these references as “palliative care.” In view of the growing numbers of
people dying with dementia, preparation for the last phase of life should be added to national strategies.
Key words: dementia, end-of-life, national health policy, palliative care
Introduction
Dementia is a growing health and social
issue worldwide; several countries have launched
national dementia strategies (Alzheimer’s Disease
International, 2012; Nakanishi and Nakashima,
2014). Because dementia results in a progressive
decline in multiple areas of function, national
strategies should cover the entire course of the
disease from early detection to the end-of-life.
Correspondence should be addressed to: Miharu Nakanishi, PhD, RN, PSW,
Mental Health and Nursing Research Team, Tokyo Metropolitan Institute of
Medical Science, 2-1-6 Kamikitazawa, Setagaya-ku, Tokyo, 156-8506, Japan.
Phone: +81-3-6834-2292. Email: [email protected]. Received 1
Dec 2014; revision requested 5 Jan 2015; revised version received 8 Jan 2015;
accepted 8 Jan 2015.
However, national dementia strategies may not
include the end-of-life content or may not be linked
to palliative care strategies. Palliative care is an
approach that improves the quality of life of people
and their families facing the problem associated
with life-threatening illness. Historically, palliative
care approaches have focused on the needs of
people with cancer. The global initiatives in recent
years have advocated “expanding palliative care to
a wide range of chronic conditions and early in
the course of illness” (Worldwide Palliative Care
Alliance, 2014). Palliative care approaches may
differ considerably from one disease to the next
and from one person to the next. The provision
of palliative care in dementia should ideally be
introduced in a seamless manner, overlapping and
2
M. Nakanishi et al.
complementing good dementia care (Alzheimer
Europe, 2008). Therefore, in order to detect
palliative care contents in the national dementia
strategies, a framework is needed of what palliative
care in dementia entails exactly.
Recently, the EAPC developed and published
a white paper that defines palliative care in 11
domains, within which are 57 recommendations
for optimal palliative care in dementia, including
a separate research agenda (van der Steen et al.,
2014). The 57 recommendations consist of policy
elements as well as practice recommendations
for professional caregivers. The EAPC domains
and recommendations were developed through
a Delphi study to achieve consensus within a
large and international group of experts from
the fields of palliative and dementia care. Full
consensus was achieved on all domains and most
recommendations, but consensus was moderate for
some recommendations regarding palliative care
and specific recommendations on nutrition and
hydration.
The present paper presents a qualitative review
of the contents of the available national dementia
strategies and a comparison of these contents to the
domains and recommendations of the EAPC white
paper to identify differences in content and possible
gaps in recommendations and policy related to
palliative care.
Methods
We examined the content of 16 national dementia
strategies from 14 countries (the unit of analysis)
that were available on 1 April 2014. A national
dementia strategy was defined as a countrywide
plan for treating dementia that was commissioned
by a national government. We used the national
dementia strategies from 12 countries identified as
having them by Alzheimer’s Disease International
(ADI) (Alzheimer’s Disease International, 2014):
Australia (Australian Health Ministers’ Conference,
2006), Denmark (Socialministreriet og Indenrigsog Sundhedsministeriet, 2010), England (Department of Health, 2009), Finland (Sosiaali- ja
terveysministeriö, 2012; Ministry of Social Affairs
and Health, 2013), France (L’Equipe de la Mission
Plan Alzheimer, 2008; 2012), the Republic of
Korea (Ministry of Health and Welfare, 2008), the
Netherlands (Ministerie van Volksgezondheid et al.,
2009; Ministry of Health, Welfare and Sport et al.,
2009), Norway (Helse-og omsorgsdepartementet,
2007; Norwegian Ministry of Health and Care
Services, 2008), Northern Ireland (Department of
Health, Social Services and Public Safety, 2011),
Scotland (The Scottish Government, 2010), the
United States (U.S. Department of Health and
Human Services, 2013), and Wales (Dementia
stakeholder groups, 2010a; 2010b; 2010c; 2010d;
Welsh Assembly Government, 2011). In addition,
as in previous work (Nakanishi and Nakashima,
2014), the Orange Plan in Japan (Ministry of
Health, Labour and Welfare, 2012a; 2012b) and
the national guideline in Sweden (Socialstyrelsen,
2010) were included. Thus, the national dementia
strategies of 14 countries were included in
our analysis. Two new dementia strategies were
published after the ADI’s report in Scotland (The
Scottish Government, 2013) and South Korea
(Ministry of Health and Welfare, 2012). Although
these were not updates, the new strategies contained
the main components of the previous strategies.
Therefore, both strategies of these countries
were included in the analysis (see Appendix
1 published as supplementary material online
attached to the electronic version of this paper at
http://journals.cambridge.org/ipg). The Australian
government published a consultation paper for the
National Framework for Action on Dementia 2013–
2017 in April 2013 (Department of Health, 2013);
however, we could not include in our analysis
because it was still under consideration in April
2014. No official English translation was available
of the full contents of the national dementia
strategies in Denmark, Sweden, Japan, and the
Republic of Korea, and for some portions of the
Netherlands strategy; thus, we used professional
translation services to translate them into English.
We focused on guidance for policy and practice,
not research agendas. We therefore excluded
the “Deltaplan Dementie” from the Netherlands
(Nederlandse Federatie van Universitair Medische
Centra et al., 2012), which has a research
and innovation program called “Memorabel” that
includes palliative care in its priorities (ZonMw,
2013) and is closely associated with the strategic
research agenda of the European Joint Programme
– Neurodegenerative Disease.
The comparison of domains in national dementia
strategies was performed with an instrument
developed by a Japanese research panel in a previous
international comparison of dementia strategies
(Nakanishi and Nakashima, 2014). The research
panel consisted of a nurse, a social worker, and
a policy scientist, who selected seventeen domains
by consensus through the review of eight national
dementia strategies and the ADI report. The ADI
identified 18 areas of policy, including several
societal aspects, such as quality of care, legal ethical
issues/rights, improved data, research funding,
policy office, and intergovernmental policies. Our
coding focused on the aspects of dementia care
in three categories and their domains: (1) early
Palliative care in national dementia strategies
detection, (2) health and social care, and (3)
environment.
Using this framework, four researchers (MN,
TN, YM, and YS) compared the contents of
national dementia strategies. The first researcher
reviewed and coded all strategies. The other three
researchers each coded the strategies of four or
five countries. The results were then compared
and differences were discussed until agreement was
reached.
Comparison between national dementia
strategies and the domains and recommendations
from the EAPC white paper regarding sections
and phrases identified as referring to palliative care
by the research team was performed (MN and
JS, in consultation with LR and DG). The results
were compared and differences were discussed
until agreement was reached about the content
of palliative care. Palliative care content was
identified in sections that were not specific to
palliative care and in sections that referred to
palliative care explicitly. An inclusive approach
was employed throughout the coding to reduce
the risk of missing content that covered domains
and recommendations from the EAPC white
paper.
Results
A separate section specifically on palliative care was
present in the strategies of three countries (England,
Northern Ireland, and Sweden). Three other
countries also addressed palliative care, but not in
a dedicated section: Scotland (second strategy; the
newer one), Finland, and Australia (Table 1). A link
to a national palliative care strategy was included
in the dementia care strategies of four of these
six countries: England (Department of Health,
2008), Scotland (The Scottish Government,
2008), Northern Ireland (Department of Health,
Social Services and Public Safety, 2010), and
Australia (Commonwealth of Australia, 2000). The
national palliative care strategy in Finland was
published before the establishment of the national
dementia strategy (Sosiaali- ja terveysministeriö,
2010), but the palliative care strategy in Sweden
was published afterwards (Socialstyrelsen, 2013).
Among the remaining eight countries, three
countries mentioned “end-of-life” care in dementia:
end-of-life care for young-onset and specific, rare
types of dementia in the Welsh strategy (an action
plan); end-of-life care in group homes in the
Japanese strategy; and guidance for dementia at the
end-of-life in the South Korean strategy (Table 1).
Whereas national dementia strategies shared
several common domains, there were also a number
3
of differences between the strategies of the 14
countries (Tables 1 and 2). Concerning early
detection, the first of the three categories, all
countries covered early diagnosis of dementia. More
than two-thirds of the countries aimed to establish
good access to information and support. Many
strategies also included statements on promoting
prevention and improved quality of health and
social care services for people with dementia
(2nd category; Table 1). In the environmental
domains (3rd; Table 2), all countries included care
coordination and family support. Other domains
were addressed in two-thirds of the countries.
In spite of palliative care not being explicitly
referred to in eight of the fourteen countries,
a number of domains from the EAPC white
paper were well represented, such as “personcentered care, communication, and shared decision
making” (Domain 2), “continuity of care”
(Domain 4; all national strategies), and “family
care and involvement” (Domain 9) (Table 3).
Although France, Japan, and South Korea
included “family support,” they did not cover
the recommendations of shared decision making
(Recommendation 2.2) or family involvement
(Recommendation 9.4) within this domain (see
Appendix 2 published as supplementary material
online attached to the electric version of this
paper at http://journals.cambridge.org/ipg). All of
the countries, with a few exceptions, covered
the following domains: Domain 3, “setting care
goals and advance planning” (except South
Korea); Domain 6, “avoiding overly aggressive,
burdensome, or futile treatment” (except Denmark
and Australia); and Domain 7, “optimal treatment
of symptoms and providing comfort” (except
South Korea) were covered. Recommendation
6.1, “reducing avoidable hospitalizations,” was
addressed by all countries except the Netherlands
(2nd category; Table 1), as was the use of
antipsychotic medication for challenging behaviors
(Recommendation 7.4). Japan especially mentioned
reducing psychiatric hospitalization rates of people
with dementia (Appendix 2). Eight countries
considered improving the quality of life as a goal
of dementia care (Recommendation 1.2).
In contrast to the domains above, several
domains were not well represented, such as
“education of the healthcare team” (Domain 10,
addressed by Scotland, Finland, and Australia),
and “societal and ethical issues” (Domain 11)
(Table 3). In the domain of “psychosocial and
spiritual support” (Domain 8), no countries
addressed spiritual caregiving (Recommendation
8.2), religious activities (Recommendation 8.3),
or a comfortable environment for dying people
(Recommendation 8.4). Furthermore, none of the
4
M. Nakanishi et al.
Table 1. Domain mapping of national dementia strategies in fourteen countries: “early detection”; “health
and social care”
DOMAIN
EARLY DETECTION
HEALTH AND SOCIAL CARE
HOME,
COUNTRY
PREVENTION
ACCESS
DIAGNOSIS
HEALTH
HOSPITAL
MEDICATION
HOME,
RESIDENTIAL,
PALLIATIVE
SOCIAL
SOCIAL
CARE
............................................................................................................................................................................................................................................................................................................................
England
X
X
X
X
X
X
X
X
X
Wales
X
X
X
X
X
X
X
X
a
X
X
X
X
X
X
X
X, b
X
X
X
X
X
X
X
X
X
France
X
X
X
X
X
X
X
The Netherlands
X
X
X
Denmark
X
X
Scotland
Northern Ireland
Finland
X
Norway
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X, b
Sweden
X
United States
X
Australia
X
X
X
X
X
X
Japan
X
X
X
X
X
X
X
X
a
South Korea
X
X
X
X
X
X
X
a
X
X
X, b
X, the domain was addressed.
a End-of-life care was mentioned, but not palliative care.
b Palliative care was mentioned in some sentences, but not in the specific section.
Table 2. Domain mapping of national dementia strategies in fourteen countries: “environment”
DOMAIN
ENVIRONMENT
CHALLENGING
COUNTRY
BEHAVIOR
HOUSING
CARE
FAMILY
COORDINATION
SUPPORT
YOUNGER
ADVOCACY
ONSET
WORKFORCE
RESEARCH
............................................................................................................................................................................................................................................................................................................................
England
X
Wales
X
X
X
X
X
X
X
X
X
X
X
X
X
X
Scotland
X
X
X
X
X
X
X
Northern Ireland
X
X
X
X
X
X
X
X
X
X
X
X
France
X
X
X
X
X
The Netherlands
X
X
X
X
X
Denmark
X
X
X
X
Finland
X
X
X
X
X
X
X
X
Norway
X
X
X
X
X
X
X
X
Sweden
X
X
X
X
X
X
X
United States
X
X
X
X
X
X
X
Australia
X
X
X
X
Japan
X
X
X
X
South Korea
X
X
X
X
X
X
X
X
X
X
X
X
X, the domain was addressed.
countries addressed “prognostication and timely
recognition of dying” (Domain 5).
Almost all the recommendations in the national
strategies were consistent with guidance provided by
the EAPC white paper. However, Japan encouraged
advance care planning for increasing impairments
and interventions at crisis points by professional
caregivers, instead of involving the patient and
eliciting patient preferences, values, needs, and
beliefs. This contradicted recommendations on
advance care planning that actively involve the
patient (Recommendation 3.2) and is reviewed
with the patient and family when appropriate
(3.6). Furthermore, South Korea stated, “In an
Table 3. Domains and recommendations from the European Association for Palliative Care (EAPC) identified in sections of fourteen national dementia
strategies that were not specific to palliative care
DOMAIN
2
PERSON-
COUNTRY
6
CENTERED
3
AVOIDING
7
CARE,
SETTING
5
OVERLY AG-
OPTIMAL
1
COMMU-
CARE
PROGNOST-
GRESSIVE,
TREAT-
APPLIC-
NICATION
GOALS
ICATION
BURDEN-
MENT OF
8
FAMILY
10
11
ABILITY
AND
AND
4
AND
SOME OR
SYMPTOMS
PSYCHOSO-
CARE
EDUCATION
SOCIETAL
OF PAL-
SHARED
ADVANCE
CONTINU-
TIMELY RE-
FUTILE
AND
CIAL AND
AND IN-
OF THE
AND
LIATIVE
DECISION
PLAN-
ITY OF
COGNITION
TREAT-
PROVIDING
SPIRITUAL
VOLVE-
HEALTH
ETHICAL
CARE
MAKING
NING
CARE
OF DYING
MENT
COMFORT
SUPPORT
MENT
CARE TEAM
ISSUES
9
............................................................................................................................................................................................................................................................................................................................................................................................................................................................
England
++
+++
++
+++
−
++
++
−
++
−
++
Wales
−
++
++
+++
−
++
++
−
++
−
−
Scotland
++
++
++
+++
−
++
++
++
++
++
++
Northern
Ireland
−
++
++
+++
−
++
++
++
++
−
−
++
++
++
+++
−
++
++
−
++
−
−
++
++
++
+++
−
++
++
++
++
−
−
Denmark
−
++
++
+++
−
−
++
−
++
−
−
Finland
++
++
++
+++
−
++
++
+
++
++
++
Norway
++
++
++
++
−
++
++
−
++
−
−
Sweden
++
++
++
++
−
++
++
+
++
−
−
United
States
−
++
++
+++
−
++
++
−
++
−
−
Australia
++
++
++
++
−
−
++
+
++
++
++
Japan
−
++
++
+++
−
++
++
−
++
−
++
South
Korea
++
++
−
++
−
+
−
−
++
−
−
+++, all recommendations of the white paper were addressed.
++, some of the recommendations were addressed.
+, only the domain was mentioned (superficially, no recommendation).
−, not addressed at all.
Bold, the contents contradicted the recommendations.
Palliative care in national dementia strategies
France
The
Netherlands
5
6
M. Nakanishi et al.
early phase of the disease, dementia is curable
and progression is preventable” in the Second
Plan, which contradicts the definition of the
EAPC white paper’s first domain, “applicability
of palliative care,” which refers to how dementia
as a disease is unresponsive to curative treatment.
Scotland’s strategy declared palliative care as one
component of “Right-based care,” which does
not apply to the white paper. Finland’s strategy
illustrated a narrow view of palliative care in
dementia: “Palliative care becomes relevant for
people with dementia when prolonging life is no
longer meaningful.” This statement contradicted
some recommendations in Domain 1, “applicability
of palliative care” (Appendix 2). Additionally, some
minor differences in content were observed between
some national dementia strategies and the EAPC
white paper. For example, several national dementia
strategies were aimed at cost reductions through
avoiding admission to hospitals or long-term care
facilities, while the EAPC recommendations for
avoiding hospitalizations are aimed at improving or
maintaining the quality of life.
Within the independent sections of three
national dementia strategies that explicitly referred
to palliative care (Table 4), two domains were
well represented: Domain 10, “education of the
healthcare team” (except in England) and Domain
11, “societal and ethical issues.” Other domains
were covered less well or only in general terms,
including “optimal treatment of symptoms and
providing comfort” (Domain 7), “psychosocial
and spiritual support” (Domain 8), and “family
care and involvement” (Domain 9). For example,
Northern Ireland’s strategy declared, “Services
for patients with palliative and end of life care
needs have developed considerably over the past
decade. Management of pain and other physical
symptoms and provision of psychological, social,
and spiritual support for both the person and their
family and carers are key elements of such care,”
which represents the general content of Domain
7 (see Appendix 3 published as supplementary
material online attached to the electric version of
this paper at http://journals.cambridge.org/ipg).
Although similar in general content (Table 3), the
sections referring to palliative care (Table 4)
lacked reference to “prognostication and
timely recognition of approaching death”
(Domain 5).
Discussion
Our qualitative content evaluation of national
dementia strategies found several common
domains, “early detection,” “health and social
care,” and “environment,” across the 14 countries.
However, there was significant variability with
respect to the level of recommendations regarding
palliative care in these the national dementia
strategies. An independent section specifically on
palliative care was available in only three countries
(England, Northern Ireland, and Sweden).
Comparison to the domains and recommendations
of the EAPC white paper, used as a standard
for palliative care in dementia, further identified
differences in content between strategies and gaps
in the addressing of palliative care.
The national dementia strategies across 14
countries cover most of the domains and a number
of specific recommendations on palliative care
in dementia. However, most frequently, there is
either no or no explicit mention of this care
being palliative care. More specifically, “personcentered care, communication, and shared decision
making” (Domain 2), “continuity of care” (Domain
4), and “family care and involvement” (Domain
9) are well represented in sections that are not
specific to palliative care. These domains are very
important throughout the disease trajectory, and
are consistent with recommendations for early
application of palliative care in dementia. However,
the national strategies covered medical issues in
palliative care, such as “avoiding overly aggressive,
burdensome, or futile treatment” (Domain 6), and
“optimal treatment of symptoms and providing
comfort” (Domain 7), to a lesser extent than the
white paper did. The strategies all lacked reference
to “prognostication and timely recognition of
dying” (Domain 5) and spiritual caregiving. In the
EAPC Delphi study, the experts found Domain
5, although important enough for inclusion, was
the least important among the eleven domains.
The lack of reference to prognostication in the
strategies can also be attributed to differences in
the targeted audience for the national dementia
strategies and the EAPC recommendations. The
EAPC white paper targeted a professional audience
of doctors, nurses, and policymakers, whereas the
dementia strategies are primarily for policymakers
and the public. National dementia strategies in
most countries have been issued by the health and
social care departments of national governments in
conjunction with advocacy groups (e.g. Alzheimer’s
associations). This might have led to focus on
ensuring good access to the health and social
care aspects of dementia care, rather than on the
medical aspects. In addition, the development of
national dementia strategies is often motivated by
political aims, such as reducing social costs of
dementia care and the development of drugs for
dementia prevention and treatment. On the other
hand, the EAPC white paper addresses optimal
Table 4. Domains and recommendations from the European Association for Palliative Care (EAPC) identified in sections of six national dementia strategies
that explicitly refer to palliative care
DOMAIN
2
PERSON-
COUNTRY
6
CENTERED
3
AVOIDING
7
CARE,
SETTING
5
OVERLY AG-
OPTIMAL
1
COMMU-
CARE
PROGNOST-
GRESSIVE,
TREAT-
APPLIC-
NICATION
GOALS
ICATION
BURDEN-
MENT OF
8
FAMILY
10
11
ABILITY
AND
AND
4
AND
SOME OR
SYMPTOMS
PSYCHOSO-
CARE
EDUCATION
SOCIETAL
OF PAL-
SHARED
ADVANCE
CONTINU-
TIMELY RE-
FUTILE
AND
CIAL AND
AND IN-
OF THE
AND
LIATIVE
DECISION
PLAN-
ITY OF
COGNITION
TREAT-
PROVIDING
SPIRITUAL
VOLVE-
HEALTH
ETHICAL
CARE
MAKING
NING
CARE
OF DYING
MENT
COMFORT
SUPPORT
MENT
CARE TEAM
ISSUES
9
............................................................................................................................................................................................................................................................................................................................................................................................................................................................
++
−
++
−
−
++
++
−
−
−
++
Northern
Ireland
+
++
−
++
−
−
+
−
+
++
++
Sweden
++
++
−
−
−
++
+
+
++
++
++
+++, all recommendations of the white paper were addressed.
++, some of the recommendations were addressed.
+, only the domain was mentioned (superficially, no recommendation).
−, not addressed at all.
Palliative care in national dementia strategies
England
7
8
M. Nakanishi et al.
Figure 1. (Colour online) The figure represents a model of changing care goals and priorities throughout the course of the dementia. It
suggests prioritizing of care goals that may apply at the same time but have variable relevance to different stages of dementia. More than
one care goal may apply at the same time. For example, for a patient with moderate dementia, the three goals may apply simultaneously
but maximization of comfort and maintenance of function may be prioritized over prolongation of life. The figure was reproduced by
permission of SAGE Publications Ltd., London, Los Angeles, New Delhi, Singapore and Washington DC, from van der Steen JT, Radbruch
L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, Jünger S, Gove D, Firth P, Koopmans RT, Volicer L; European Association for
Palliative Care (EAPC), White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations
C The Authors, 2013).
from the European Association for Palliative Care, Palliative Medicine, Copyright (
palliative care and, therefore, clarifies the principles
of palliative care in dementia. The three countries
that reported on palliative care explicitly referred
to the end-of-life, but not to palliative care at the
time of diagnosis. The national dementia strategies
may reflect a narrower definition of palliative
care in the dementia community than the EAPC
domains.
The strategies in England, Scotland, Northern
Ireland, and Australia addressed most of the
domains of the EAPC white paper. The strategy
of the US included less of the contents; this was
a surprising finding given that the majority of
research on palliative care in dementia originates
in the US (van der Steen, 2010). It has been
suggested that a gap exists between policies and
research about the end-of-life care for dementia
in the US (Gusmano, 2012). Further, some
contradictory recommendations were observed in
the national dementia strategies of Finland, Japan,
and South Korea. A narrow view of palliative care
in the Finnish strategy is in line with its focus
on prevention and rehabilitation. The Japanese
strategy may reflect the paternalism in clinical
practice in Japan, where there is no legislation on
advanced directives or care planning (Nakanishi and
Nakashima, 2014). South Korea’s strategy is also
focused on prevention and treatment of dementia,
and regarded dementia in its early stage as a curable
disease and its progression as preventable. The
contradictions in the Asian strategies (Japan and
South Korea) may reflect differences in culture; in
Japan, patient autonomy is not firmly established
and there is controversy about withdrawing or
withholding aggressive treatment (Yaguchi et al.,
2005; Arcand et al., 2013; van der Steen et al.,
2013).
As dementia progresses to more severe stages,
it becomes reasonable to consider quality of life
specifically as maintenance of function and maximization of comfort. These are potential goals of care
even with mild dementia, and may become the main
goals of care with progressive dementia (Figure 1)
(van der Steen et al., 2014). Meanwhile, there is no
consensus about the applicability of palliative care
through dementia stages (van der Steen et al., 2014).
Dementia care specialists might be somewhat more
critical of palliative care in dementia than palliative
care specialists might (paper in progress).
The inclusion of content, without explicitly
designating this content as relating to palliative care,
might indicate a large overlap between the fields of
palliative care and dementia care. Person-centered
care, communication, and shared decision making,
as well as family care and involvement may be core
topics not only in palliative care, but also in other
fields of medicine, such as dementia care. Thus,
close collaboration between dementia and palliative
care researchers and caregivers would have major
benefits for both fields.
Collaboration certainly should not mean that
palliative care services take over dementia care
Palliative care in national dementia strategies
or that special palliative care services for patients
with dementia are needed. Collaboration could be
established with the participation of palliative care
experts in the regular team services in dementia
care. The role of palliative care experts could
be identifying patients with palliative care needs,
supporting the formulation or revision of treatment
goals, and participating in decisions on withholding
or withdrawing aggressive treatment. However,
timely recognition of dying is crucial in order to
make revisions to the goal of care, moving away from
the focus on life prolongation and maintenance of
function to providing comfort, and for withholding
or withdrawing aggressive treatment interventions,
such as feeding tubes or hospital admissions.
Using all available expertise for prognostication is
paramount for good care until the very end-oflife.
Collaboration between palliative care and
dementia care experts allows for patients with
dementia to benefit from recent palliative care
developments, such as national palliative care
strategies that have been developed in some
countries or political initiatives such as the recent
declaration on palliative care by the World Health
Assembly in May 2014 (World Health Assembly,
2014). Much of this advantage might be lost if the
term “palliative care” is replaced by other terms,
such as “end-of-life care,” as is happening in some
national strategies. A broad consensus has been
reached that the term “palliative care” should also
be used for other patient groups (Pastrana et al.,
2008).
These findings should be interpreted in light of
the study limitations. We did not systematically
examine the countries’ cultural influences if they
had not been described in the national dementia
strategies. Thus, some overlap between contents of
national dementia strategies and recommendations
from the EAPC white paper might have been
missed. Furthermore, some of the countries’
national dementia strategies could have influenced
the other countries’ strategies, thereby affecting
the overlap in strategy content. For example, the
strategy in Northern Ireland cited the strategies
in England, Scotland, and Australia. While the
development of the EAPC white paper included
healthcare professionals from countries other than
Europe, it generally stands on the views of
professionals from two European countries out
of the 14 countries with dementia care strategies
described herein.
Despite these limitations, the present study
provides a comprehensive examination of national
dementia strategies and the extent that palliative
care in dementia is included. National dementia
strategies are partly covered by a recent definition
9
of palliative care in dementia, although references
to palliative care in these strategies are infrequently
labeled as “palliative care.” Our results call for
political efforts to add preparation for the last phase
of life to national dementia strategies for promotion
of palliative care in dementia patients across the
world.
Conclusions
The present study explored a qualitative review
of the contents of the available national dementia
strategies and a comparison of these contents to
the domains and recommendations of the EAPC
white paper. National dementia strategies cover
part of the recent definition of palliative care in
dementia, although they do not frequently label
these references as “palliative care.” In view of the
growing numbers of people dying with dementia,
preparation for the last phase of life should be added
to national strategies.
Conflict of interest
None.
Description of authors’ roles
M. Nakanishi contributed to the study design,
collecting data, analysis and interpretation of data,
and writing the paper. T. Nakashima was involved
in carrying out the data collection and analysis of
data, and writing the paper. Y. Shindo was involved
in carrying out the data collection, analysis and
interpretation of data, and writing the paper. Y.
Miyamoto was involved in carrying out the data
collection and analysis of data, and writing the
paper. D. Gove supervised the data collection,
analysis, and interpretation of data. L. Radbruch
contributed to designing the study, supervised
analysis and interpretation of data, and assisted with
writing the paper. J. van der Steen contributed to
designing the study, and analysis and interpretation
of data, supervised all aspects, and assisted with
writing the paper.
Acknowledgments
This research received no specific grant from any
funding agency in the public, commercial, or notfor-profit sectors. We thank following individuals
for their valuable input: Jed A. Levine, M.A.,
Executive Vice President, Director, Programs and
Services of the Alzheimer’s Association, New York
10
M. Nakanishi et al.
City Chapter; and Anne Arndal, M.D., former
general practitioner, former chair of the Danish
Alzheimer Association (Alzheimerforeningen).
Supplementary Material
To view supplementary material for this
article, please visit http://dx.doi.org/10.1017/
S1041610215000150.
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