XML Template (2014) [30.10.

2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Article
Dementia
Shared decision-making in 0(0) 1–17
! The Author(s) 2014
dementia: A review of patient Reprints and permissions:
sagepub.co.uk/journalsPermissions.nav

and family carer involvement DOI: 10.1177/1471301214555542

dem.sagepub.com

Lyndsey M. Miller
Oregon Health & Science University, Portland, OR, USA

Carol J. Whitlatch
Benjamin Rose Institute on Aging, Cleveland, OH, USA

Karen S. Lyons
Oregon Health & Science University, Portland, OR, USA

Abstract
This paper reviews empirical findings concerning the decision-making process of persons with
dementia and their family carers, with a particular focus on the extent and determinants of
involvement of persons with dementia in the decision-making process. To be included in this
review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report
empirical data from participants with dementia and/or their family carers, and pertain to the
involvement of persons with dementia and their family carers in decisions about everyday care,
medical care and treatment, or long-term care. A total of 36 studies were included. Results
indicated that not all persons with dementia are excluded from participating in the decision-
making process, but there is a broad spectrum of what constitutes shared decision-making in
dementia. Studies concerning the determinants of shared decision-making mostly focused on non-
modifiable factors. Future research is needed to better promote shared decision-making among
persons with dementia and their family carers.

Keywords
decision-making, caregiving, dementia, personhood, care values

Each of the 35.6 million families worldwide who are affected by dementia (Prince et al., 2013)
must make decisions about everyday care, medical treatment, and long-term care
arrangements. The decision-making process for persons with dementia and their family

Corresponding author:
Lyndsey M. Miller, School of Nursing, Oregon Health & Science University, 3455 SW US Veterans Hospital Road, SN-ORD,
Portland, OR 97239, USA.
Email: Millerly@ohsu.edu

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

2 Dementia 0(0)

carers is fraught with complex family, ethical, and legal dilemmas. Many of these dilemmas
hinge on the lack of involvement of the person with dementia in decisions about their own
wellbeing and care. In the context of dementia, examinations of the decision-making process,
as opposed to its outcomes, have often been limited in scope to one of two issues:
determining the loss of decision-making capacity (e.g. Arias, 2013; Gurrera, Karel, Azar,
& Moye, 2007; Moye, Karel, Gurrera, & Azar, 2006), or establishing the family carer’s
responsibilities as a surrogate decision-maker (e.g. Jox et al., 2012; Smith, Lo, & Sudore,
2013). Questions surrounding the shared decision-making involvement of the person with
dementia and family carer are relatively new explorations in dementia research, and offer
possibilities for understanding the complexities of decision-making that extend beyond the
dichotomy of capacity versus surrogacy. The purpose of this paper is to review recent
empirical research that has contributed to knowledge about the shared decision-making
involvement of persons with dementia and their family carers.
Several theoretical perspectives presented in the 1990s emphasize the person with
dementia, and precede a more recent body of research on the involvement of persons with
dementia in the decision-making process. Notable contributions from social psychologist
Tom Kitwood (1990), biomedical ethicist Rebecca Dresser (1992), and philosopher Agnieska
Jaworska (1999) have provided rationale for including persons with dementia and respecting
their current values and preferences during the decision-making process. A fundamental
assertion of Kitwood’s theory is that the medical model of dementia is unnecessarily
deterministic, and that social and relational losses—not progressive cognitive
impairment—strip personhood from persons living with dementia (Kitwood, 1990).
Dependence upon others to make decisions about everyday and medical care is an
undeniable loss in one’s late-life milieu, and it diminishes personhood. According to
Dresser (1992), the interests of persons with dementia continue to evolve in conjunction
with the effects of their illness. Consequently, their current values and preferences, as
opposed to the values held prior to dementia, must be taken into account during the
decision-making process (Dresser, 1992). Jaworska adds to Dresser’s stance by arguing
that persons with dementia are capable of decision-making involvement so long as they
maintain the capacity to value, and there is nothing about the capacity to value that
requires an intact memory (Jaworska, 1999). These theoretical perspectives support the
practice of shared decision-making within family care dyads (dyads comprised of a person
with dementia and a family carer).
Family carers’ involvement in decision-making is often essential to the process of
translating the values of persons with dementia into decisions. Although frustration and
confusion are common reactions to care-related decision-making for many older
adults, persons with dementia typically face the additional challenge of doing so with
impaired insight and executive dysfunction (Kensinger, 2009; Orfei et al., 2010; Sörensen,
Mak, & Pinquart, 2011). It is thus customary in healthcare settings to rely upon family
members to make treatment and long-term care decisions for persons with dementia,
regardless of whether legal or medical channels have formally established incapacity to
make decisions (Kapp, 2002). Yet, the involvement of family carers in decision-making
need not supersede the contributions of persons with dementia to decisions about their
own care. Persons with dementia maintain the ability to communicate values and
preferences long after their decision-making abilities are affected by cognitive changes.
Research within the past 13 years indicates that participants can reliably report on their
care values and preferences, well-being, and quality of life through moderate to severe

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 3

dementia (Feinberg & Whitlatch, 2001, 2002; Karel, Moye, Bank, & Azar, 2007; Logsdon,
Gibbons, McCurry, & Teri, 2002; Mak, 2011; Whitlatch, Piiparinen, & Friss Feinberg,
2009). Thus, persons with dementia are able to communicate their values, but not
necessarily execute a decision accordingly.
Following these theoretical and empirical developments, a number of studies have
contributed to knowledge about the involvement of both the person with dementia and
the family carer in the decision-making process. The goals of this paper are to: (1) review
findings on the extent of shared decision-making involvement in family care dyads;
(2) identify factors that prevent or promote involvement of persons with dementia; and
(3) identify future research that is needed in order to better understand, and facilitate,
shared decision-making by the family care dyad. Methods for determining decision-
making capacity of persons with dementia will not be reviewed in this paper, but have
been reviewed and described elsewhere (e.g. Arias, 2013; Karlawish, 2008; Kim et al.,
2011; Moye & Marson, 2007). Additionally, this paper joins others in promoting the
notion that the involvement of persons with dementia in decision-making does not
necessarily end—nor does the family carer’s involvement begin—with changes in the
decision-making abilities of persons with dementia (O’Connor, Purves, & Downs, 2009;
Sabat, 2005).

Method
A broad search of the recent literature on decision-making in dementia, including results
from all disciplines, was conducted through several databases. A scope of 15 years was
established based on the theoretical and empirical developments guiding this paper. Ovid
MEDLINE (1999 to July, Week 1, 2014), PsychInfo (Ovid), and CINAHL were searched
using the Medical Subject Heading (MeSH) term ‘‘dementia’’ in combination with the
MeSH terms: ‘‘decision making,’’ and ‘‘patient participation’’. The searches were limited
to peer-reviewed journal articles written or available in English, and publication dates
between 1999 and July 2014. This strategy yielded 781 results from Ovid MEDLINE. An
additional 53 non-duplicate articles were found in PsychInfo, and 16 additional non-
duplicate articles from CINAHL. Hand-combing of abstracts and removal of sources that
were not based upon participant data (e.g. reviews, editorials, commentary pieces) or that
were focused on populations that did not pertain to dementia and family care dyads
(e.g. schizophrenia, physicians) yielded 153 articles (107 MEDLINE; 30 PsychInfo; 16
CINAHL).
The next phase of the selection process involved screening for content relevant to the
decision-making involvement of persons with dementia and family carers. Studies with
results pertaining to the involvement of persons with dementia and their family carers in
decisions about healthcare delivery, treatment, long-term care, caregiving, and everyday care
were included. Studies that focused on methods for determining decision-making capacity
(33) or on surrogate decision-making (38) were excluded. Also excluded were studies that
focused primarily on the healthcare provider’s clinical decision-making process (9), decision-
making around participation in research (14), and studies regarding neurological aspects of
the decision-making process (12). Finally, studies pertaining to advance directives (27) and
decision-making at the end-of-life (20) were excluded. This latter criterion reflects the aim of
the paper to review knowledge about the shared decision-making process between persons
with dementia and family carers. A total of 33 articles met the criteria for inclusion.

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

4 Dementia 0(0)

Reference sections from this set of articles were then examined, and an additional three
articles that also met the inclusion criteria were chosen for the final set of 36 articles for
analysis.
The final 36 articles were diverse in several ways. Most studies (20) included both persons
with dementia and family carers as participants. Eight studies interviewed the family carer
only regarding the decision-making process, and eight studies interviewed the person with
dementia only. The majority of quantitative studies (11) used a measure of decision-making
involvement, but only one of those measures (used in four studies) has been psychometrically
tested among participants with dementia (see: Menne, Tucke, Whitlatch, & Feinberg, 2008).
Most studies (19) were qualitative, with a variety of methods including critical ethnography,
phenomenology, thematic analysis, and grounded theory. Six studies were longitudinal,
including one randomized controlled trial (Hilgeman et al., 2014), and the remaining were
cross-sectional. Publication dates spanned 2001 to 2014.

The extent of shared decision-making involvement

Preferences and expectations of persons with dementia
Although few studies have surveyed persons with dementia about preferences for their own
involvement in decision-making, many report preferences anecdotally (e.g. Samsi &
Manthorpe, 2013; Tyrrell, Genin, & Myslinski, 2006). In the four known studies that
have asked persons with dementia directly about their preferences for involvement in
decision-making, participants (aggregate n ¼ 249) resoundingly responded that they want
to make, or to participate in, decisions regarding their own treatment and care (Hamann
et al., 2011; Hirschman, Joyce, James, Xie, & Karlawish, 2005; Karel, Gurrera, Hicken, &
Moye, 2010; Karel et al., 2007). When studied over a nine-month period, the preferences of
persons with dementia for their involvement in decision-making remained stable (Karel
et al., 2007). Furthermore, persons with mild cognitive impairment or dementia typically
identified themselves as the agents who should have the most say in decision-making around
general medical issues, relocation to long-term care, and driving cessation, over and above
their family carers and physicians (Adler, 2010; Hamann et al., 2011; Karel et al., 2007).

The spectrum of shared decision-making

In contrast to the preferences and expectations for decision-making involvement held by
persons with dementia, the actual extent of their decision-making involvement is likely more
limited. Even at levels of very mild cognitive impairment (Mini-Mental State Exam (MMSE)
scores of 27–30), only 9% of persons with dementia (n ¼ 7) made the final decision about
their medical treatment in one study (Karlawish, Casarett, Propert, James, & Clark, 2002).
In the same study, 64% of family carers (n ¼ 48) indicated that they made the final decisions
about medical care, and 26% of family carers (n ¼ 19) indicated that they made decisions
together with the person with dementia (Karlawish et al., 2002). In another study, only 44%
of family carers indicated that they would involve the person with mild to moderate
dementia in a decision regarding medical treatment (Hirschman, Joyce, James, Xie,
Casarett, et al., 2005). The most likely scenario for persons with mild dementia is a
shared decision-making process and a consensus decision with a family carer (Karlawish
et al., 2002; Samsi & Manthorpe, 2013; Smebye, Kirkevold, & Engedal, 2012). For persons
with moderate dementia, family carers are more likely to either check-in before making final

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 5

decisions or make the final decisions alone (Karlawish et al., 2002; Samsi & Manthorpe,
2013).
The spectrum of shared decision-making also includes patterns that are more difficult to
characterize. Smebye, Kirkevold, and Engedal (2012) identified the pattern of pseudo-
autonomous decision-making, whereby family carers made decisions that they based upon
assumptions of preferences rather than confirming the current choice of the person with
dementia directly. Two studies identified strategies that family carers employed to give
persons with dementia autonomy—labeled ‘assisted autonomy’ by Boyle (2013)—while
limiting the number of options so that it would be less daunting (Boyle, 2013;
Fetherstonhaugh, Tarzia, & Nay, 2013). Another study found a common pattern of
bridging during decision-making, which was described (by persons with dementia) as
looking for ways to connect one’s current life to the future through the support of carers
(Keady, Williams, & Hughes-Roberts, 2009).

Perceptions of persons with dementia

For persons with dementia, the tension between relying on family carers and protecting their
own agency arises frequently in the context of decision-making. Persons with dementia are
able to identify consistently the person they prefer to participate in decision-making with
them, and that person is most often an adult child or spouse family carer (Feinberg &
Whitlatch, 2002; Karel et al., 2007). Persons with dementia also emphasize an interest in
being involved in the process of making treatment decisions, rather than making the final
decision, but there is a difficult balance between gaining the family carer’s subtle support and
having family carers take over the process completely (Fetherstonhaugh et al., 2013;
Hirschman, Joyce, James, Xie, & Karlawish, 2005; Keady et al., 2009). Many persons
with dementia think that decisions should be a shared responsibility (Adler, 2010;
Horton-Deutsch, Twigg, & Evans, 2007; Karel et al., 2010). Yet, persons with dementia
express difficulties in achieving a shared decision-making process (Boyle, 2013;
Fetherstonhaugh et al., 2013; MacQuarrie, 2005; Tyrrell et al., 2006). During the process
of making a decision, some persons with dementia frequently feel that they are not being
listened to by family carers, and that they are not able to express their views adequately prior
to the final decision (Tyrrell et al., 2006). Similar themes identified by persons with dementia
during in-depth interviews include marginalization (Boyle, 2013; Fetherstonhaugh et al.,
2013), and a loss of control over their own lives (MacQuarrie, 2005).
Alternative perspectives of the perceptions of persons with dementia have also been
presented. Some persons with dementia have difficulty considering their ‘‘future selves’’
(Dening, Jones, & Sampson, 2013), and may avoid involvement in decision-making
(de Boer, Dröes, Jonker, Eefsting, & Hertogh, 2012; MacQuarrie, 2005). Although no
studies in this review specifically examined the relationship between avoidance and
decision-making, there is evidence that some persons with dementia fear their future
cognitive decline (de Boer et al., 2012) and may interpret dementia as a threat to their
autonomy (MacQuarrie, 2005). Avoidance of decisions that have the potential to conjure
up these fears could be interpreted as a self-protective mechanism. Still, as a recent study
indicated, persons with dementia freely express their preferences for future care when
prompted, even when they also express uncertainty about participating in the decision-
making process (Goodman, Amador, Elmore, Machen, & Mathie, 2013). It may be that
some persons with dementia want to avoid certain aspects of the decision-making process,

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

6 Dementia 0(0)

such as requesting to be involved, rather than avoiding the decision-making process in its
entirety. There is also evidence that when persons with dementia place greater importance on
maintaining their own autonomy, they also report higher levels of decision-making
involvement (Menne & Whitlatch, 2007). In other words, the desire to participate in
decisions is fairly universal among persons with dementia but the broader value of
autonomy is not. The strength of the value of autonomy may be a better indicator of
which persons with dementia will persevere with decision-making involvement.

Perceptions of family carers

Family carers accurately identify themselves as the person who the family member with
dementia would want to make decisions for them about their care (Feinberg & Whitlatch,
2002). However, family carers underestimate the interest of the person with dementia in
participating in decisions regarding their treatment and care (Hirschman, Joyce, James, Xie,
& Karlawish, 2005), and perceive the decision-making involvement of persons with dementia
to be less than persons with dementia themselves perceive their involvement to be (Feinberg
& Whitlatch, 2002). Furthermore, in a study that explored family care dyads’ preferences for
the participation of patients with mild cognitive impairment or early Alzheimer’s disease in
five different decisions (three medical decisions, driving cessation, and relocation to long-
term care), family carers (n ¼ 99) preferred the patient to have significantly lower
participation in all five decisions than the patients themselves (n ¼ 100) preferred
(Hamann et al., 2011).
The family carer’s perception of the ability of the person with dementia to participate in
decision-making is an important factor in their own decision-making process (Caron,
Ducharme, & Griffith, 2006). Family carers who perceive ‘‘cognitive overload’’ in the
person with dementia intentionally limit their involvement by reserving shared decision-
making for the most important decisions (Samsi & Manthorpe, 2013), or by restricting
the number of possible options from which the person with dementia can make a decision
(Fetherstonhaugh et al., 2013). For example, one spouse no longer asked her husband with
dementia what he wanted for dinner, in an attempt to reduce the burden of making minor
decisions (Samsi & Manthorpe, 2013). Finally, the family carer’s perception of the extent of
the involvement of persons with dementia in decisions may have other repercussions. Family
carers who perceive persons with dementia as being more involved in everyday decision-
making are also more congruent in their perceptions of the everyday care values held by the
person with dementia (Reamy, Kim, Zarit, & Whitlatch, 2011). This finding seems to be
indicative of the importance of the family carer’s perception of shared decision-making to
the cohesion of the family care dyad.

Determinants of shared decision-making involvement

Cognitive impairment
Persons with dementia are more likely to be involved in decision-making when the dementia
diagnosis is new or recent (Hirschman, Xie, Feudtner, & Karlawish, 2004; Menne &
Whitlatch, 2007), when they have greater insight into their condition (Hirschman, Joyce,
James, Xie, & Karlawish, 2005), and when the stage of dementia is mild (Hirschman, Joyce,
James, Xie, Casarett, et al., 2005; Karlawish et al., 2002; Menne et al., 2008). Shared
decision-making typically occurred when the person with dementia scored 20 or above on

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 7

the MMSE (Folstein, Folstein, & McHugh, 1975) in two studies of family care dyads
(Hirschman et al., 2004; Karlawish et al., 2002). In a longitudinal study of 77 family care
dyads, once the scores of the participants with dementia dropped to between 12 and 19 on
the MMSE, family carers were more than twice as likely (OR ¼ 2.35, 95% CI ¼ 1.01, 5.49) to
take a dominant or exclusive role in decision-making compared to when scores were 20 and
above, controlling for age of the participants with dementia and the family carers’ burden
(Hirschman et al., 2004). Thus, the extent of decision-making involvement of persons with
dementia declines in tandem with the progression of dementia.

Demographic factors
The demographic characteristics of family care dyads who participate in shared decision-
making involvement appear to be different from those of the dyads who do not share
involvement. Higher levels of education (greater than 12 years) have a positive association
with decision-making involvement of persons with dementia (Hirschman, Joyce, James, Xie,
Casarett, et al., 2005; Menne & Whitlatch, 2007). Older age in either the person with
dementia or the family carer is negatively associated with shared decision-making
(Hirschman et al., 2004; Menne et al., 2008). Controlling for MMSE score and family
carer burden, each year of increase in age of participants with dementia was associated
with a 6% increase in the odds (OR 1.06, 95% CI ¼ 1.00–1.12) of carer-dominated
decision-making in a longitudinal study of 77 family care dyads (Hirschman et al., 2004).
Gender also appears to influence decision-making involvement, albeit in opposite
directions across studies. Some report that males with dementia were more likely to
remain involved in medical decision-making (Hirschman, Joyce, James, Xie, Casarett,
et al., 2005), and in financial decision-making (Boyle, 2013). In two other studies (same
sample) of everyday care decisions such as eating and dressing, females with dementia had
a greater likelihood of decision-making involvement (Menne et al., 2008; Menne &
Whitlatch, 2007). Family carer gender may also influence shared decision-making. Dyads
with Female family carers were associated with greater involvement of persons with
dementia in two studies (same sample pool) (Hirschman, Joyce, James, Xie, Casarett,
et al., 2005; Hirschman, Joyce, James, Xie, & Karlawish, 2005), and dyads with male
family carers were associated with greater decision-making involvement of persons with
dementia in two other studies (Menne et al., 2008; Menne & Whitlatch, 2007). The
conflicting direction of influence of gender on decision-making involvement may be due in
part to the types of decisions. As Menne, Tucke, Whitlatch, and Feinberg discussed (2008),
females who typically made many of the everyday household decisions (e.g. what food to buy
and eat at meals) prior to developing dementia, would likely remain involved to a greater
extent than the males who never were involved in those decisions. Likewise, in many
traditional households with only the male earning the family income, males may maintain
involvement in financial decisions for a longer period after becoming cognitively impaired.
To explore this conflict further, future studies will need to compare the decision-making
process in families before and after a dementia diagnosis.
The type of kinship between the person with dementia and family carer also influences
decision-making involvement. Spouses in three studies (same sample pool) were more likely
than adult children to involve persons with dementia in decisions about their treatment and
care (Hirschman, Joyce, James, Xie, Casarett, et al., 2005; Hirschman, Joyce, James, Xie, &
Karlawish, 2005; Hirschman et al., 2004). In the first study, spouse family carers were 2.57

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

8 Dementia 0(0)

times as likely as adult child family carers to participate in shared decision-making

involvement with persons with dementia (OR ¼ 2.57, 95% CI ¼ 1.12–5.90), although the
analysis did not control for other risk factors, such as relationship quality (Hirschman
et al., 2004). The second study controlled for the MMSE score of the person
with dementia and the family carer’s gender, and found spouse carers to be 7.58 times as
likely as adult children carers to involve persons with dementia in decision-making around
medical treatment (OR ¼ 7.58, 95% CI ¼ 2.25–25.54) (Hirschman, Joyce, James, Xie,
Casarett, et al., 2005). One explanation given was that spouse carers know the person
with dementia better, and may work harder to be engaged and find effective approaches
to communicating (Hirschman, Joyce, James, Xie, & Karlawish, 2005). Further work that
includes both kinship type and the quality of the relationship is needed to untangle these
findings.

Modifiable factors
Few studies have examined whether modifiable factors influence the involvement of persons
with dementia in the decision-making process. In one study, poorer quality of life in the
person with dementia, depression in the family carer, and negative relationship strain were
negatively associated with decision-making involvement of the person with dementia (Menne
et al., 2008). Family carer burden was associated with less decision-making involvement
among participants with dementia in two earlier studies (Hirschman et al., 2004;
Karlawish et al., 2002). In a longitudinal qualitative study of family care dyads, persons
with dementia and family carers described their strategies to maintain the autonomy of the
person with dementia, but the impact of their efforts on decision-making was not reported
(Samsi & Manthorpe, 2013). As mentioned earlier, the accuracy of the family carer’s
perception of the values and preferences of the person with dementia was associated with
greater involvement of persons with dementia in decision-making in several studies (Reamy
et al., 2011; Whitlatch, Feinberg, & Tucke, 2005; Whitlatch et al., 2009). According to
Reamy et al. (2011), one explanation for this finding may be related to the likelihood that
a carer who is supportive of shared decision-making is also more adept at deciphering the
values of the person with dementia. The relationship between shared decision-making and
the carer’s perception of care values could have important implications for interventions to
improve the accuracy of surrogate decision-making in later stages of dementia, or to reduce
incongruence among family care dyads.

Factors related to diagnosis and care planning

Some persons with dementia lose the chance to be involved in decision-making entirely when
their dementia diagnosis is not openly disclosed to them (Laakkonen, Raivio, Eloniemi-
Sulkava, Tilvis, & Pitkala, 2008), or when a diagnosis is difficult to obtain during the
early stages of disease (Adler, 2010). Family carers also report that they feel pressured by
health care providers and case managers to take charge and make decisions with or without
input from the patient with dementia (Couture, Ducharme, & Lamontagne, 2012; St-Amant
et al., 2012). Time-specific hindrances were identified in several qualitative studies, including
a lack of early discussions with persons with dementia and failure to explore options together
while all the options are still available (Adler, 2010; Horton-Deutsch et al., 2007; St-Amant
et al., 2012; Wolfs et al., 2012). Although these qualitative studies provide rich detail of the

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 9

experiences of family carers, quantitative studies that build on this important work, control
for other influential factors, and include larger, more representative samples are needed.

Types of decisions
Everyday care
Seven studies included in this review specifically considered everyday care decisions, such as
grooming, socializing, eating, and spending money (Adler, 2010; Boyle, 2013; Feinberg &
Whitlatch, 2002; Menne et al., 2008; Menne & Whitlatch, 2007; Reamy et al., 2011; Samsi &
Manthorpe, 2013). Notably, four of the seven studies used versions of a measure for
decision-making involvement of persons with dementia that is the only known measure of
decision-making to be developed for the family care dyad (Feinberg & Whitlatch, 2002;
Menne et al., 2008; Menne & Whitlatch, 2007; Reamy et al., 2011). The current Decision-
Making Involvement (DMI) Scale includes 15 items that consider everyday decisions such as
what foods to buy, what to do in spare time, and when to go to bed (Menne et al., 2008). On
a 0 to 3 scale (0 ¼ not at all involved, 3 ¼ very involved) persons with dementia across three
studies rated their decision-making involvement, on average, to be 1.89 (SD ¼ .60) to 2.30
(SD ¼ .59), whereas family carers rated the involvement of persons with dementia in
everyday decisions to be 1.67 (range ¼ .33–2.73) to 1.88 (SD ¼ .76) (Feinberg & Whitlatch,
2002; Menne et al., 2008; Menne & Whitlatch, 2007). Additionally, two of these studies
measured discrepancies within family care dyads’ ratings and found that persons with
dementia perceived their own involvement in decision-making about everyday care to be
significantly greater than family carers perceived the involvement of the person with
dementia (Feinberg & Whitlatch, 2002; Menne et al., 2008).
Qualitative findings further articulate the patterns of everyday decision-making in family
care dyads. A phenomenological study of 12 family care dyads examined the changing
dynamics of everyday decision-making in the home (Samsi & Manthorpe, 2013). Over
time, all dyads moved progressively toward substituted decision-making by the family
carer, but the majority of dyads deliberately attempted to support the autonomy of the
person with dementia (Samsi & Manthorpe, 2013). Attempts to support autonomy ranged
from limiting options and providing decision-making cues to restricting the types of
decisions to the most important ones (Samsi & Manthorpe, 2013). An ethnographic study
of 21 English family care dyads examined the involvement of persons with dementia in
financial decision-making, and found most family carers had taken over entirely,
including decisions about how to spend money on a day-to-day basis (Boyle, 2013). The
few persons with dementia who retained financial decision-making autonomy were also
primarily responsible for these decisions prior to dementia (Boyle, 2013). Some couples
had taken particular steps to maintain financial autonomy among persons with dementia
in everyday situations, such as arranging for payment on credit at local stores (Boyle, 2013).
Still, most persons with dementia became excluded from the financial decision-making
process after a dementia diagnosis, regardless of their ability to remain involved (Boyle,
2013).

Medical treatment
Seven studies included in this review specifically considered the medical and
healthcare decision-making process (Hirschman, Joyce, James, Xie, Casarett, et al., 2005;

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

10 Dementia 0(0)

Hirschman, Joyce, James, Xie, & Karlawish, 2005; Hirschman et al., 2004; Horton-Deutsch
et al., 2007; Karel et al., 2010, 2007; Karlawish et al., 2002). Persons with dementia prefer a
healthcare decision-making process that is shared between their family carer, doctor, and
themselves (Hirschman, Joyce, James, Xie, & Karlawish, 2005; Karel et al., 2010, 2007),
whereas the majority of family carers indicated that they would make the final medical
decisions alone and may or may not involve the person with dementia in the process
(Hirschman, Joyce, James, Xie, Casarett, et al., 2005; Karlawish et al., 2002). In the two
studies that included both members of the dyad, incongruence in preferences for and
perceptions of the medical decision-making process were apparent, with persons with
dementia favoring more involvement and perceiving actual involvement as higher than
family carers perceived or anticipated involvement of persons with dementia to be
(Hirschman, Joyce, James, Xie, & Karlawish, 2005; Horton-Deutsch et al., 2007). It is
worth noting that none of the seven studies took place in an inpatient setting. All
participants completed surveys during an outpatient clinic visit or at home.

Long-term care placement

Very few studies examined the involvement of persons with dementia in the decision-making
process surrounding long-term care. Only two long-term care decision-making studies could
be found that included persons with dementia as participants (St-Amant et al., 2012; Tyrrell
et al., 2006). In a longitudinal ethnographic study of nine persons with dementia, their family
carers, and case managers from long-term care settings, St.-Amant et al. (2012) described a
lack of involvement of the person with dementia in the decision-making process, and
a reliance on an oversimplified notion of incompetence in persons with dementia as a
contributing factor. Despite family carers’ intention to make decisions that were
congruent with the wishes of their family member with dementia, they prematurely
excluded the person with dementia from conversations about placement in order to
accommodate this dichotomous notion of incompetence versus competence (St-Amant
et al., 2012). Case managers also felt it was their legal duty to focus on the decision of the
individual who was named as a surrogate decision-maker and even exclude the person with
dementia from the conversation, rather than entertain a variety of perspectives (St-Amant
et al., 2012). In another qualitative study of 21 French family care dyads, Tyrrell, Genin, and
Myslinski (2006) found that most persons with dementia did not feel that they were able to
adequately express their views about a long-term care placement or home care service
decision, and all but one participant with dementia thought that the decision was made
without sufficient time for reflection. Although an aggregate of only 30 persons with
dementia participated in these two studies, the findings are consistent with each other and
also with the reports from the family carer participants.
Family carers were interviewed in an additional five studies about the decision-making
process for long-term care placement of a relative with dementia (Butcher, Holkup, Park, &
Maas, 2001; Caldwell, Low, & Brodaty, 2014; Caron et al., 2006; Chang & Schneider, 2010;
Couture et al., 2012). In all of these studies, family carers were the instigators of the
decision-making process for long-term care (Butcher et al., 2001; Caldwell et al., 2014;
Caron et al., 2006; Chang & Schneider, 2010; Couture et al., 2012). However, it was
unclear whether it was an assumption of the studies that carers would be making long-
term care placement decisions alone, which could have led to recruitment of carers for
whom this was already true.

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 11

The primary family carer often involves other family members as well as health care
professionals in the difficult process of deciding upon long-term care (Caldwell et al.,
2014; Caron et al., 2006; Chang & Schneider, 2010; Couture et al., 2012). The role of the
person with dementia in the process was either unspecified or nonexistent in all five carer
studies. In one study, family carers believed that decision-making capacity limited the
participation of the person with dementia in decisions surrounding long-term care
placement, and in choosing placement over home-based care (Caron et al., 2006). Another
study identified health care professionals as gatekeepers for involvement of persons with
dementia in conversations around placement decisions (Couture et al., 2012). Regardless of
the underlying reasons, the overarching message taken from this group of studies is that
persons with dementia do not seem to be involved in decisions surrounding their own
placement in long-term care. This message could reflect the types of participants involved
in these studies, namely family carers of persons who are more severely impaired by or
exhibiting more symptoms of dementia. Alternatively, it could reflect the reality that most
persons with dementia do not want to live in a nursing home (Feinberg & Whitlatch, 2002),
and thus the decision to end home care may indeed rest with the family carer.

Interventions
Several interventions with outcomes intended to improve the shared decision-making
process among family care dyads have been published within the last eight years
(Hilgeman et al., 2014; Murphy & Oliver, 2013; Silverstein & Sherman, 2010; Whitlatch,
Judge, Zarit, & Femia, 2006). Most recently, Hilgeman et al. (2014) completed a pilot
randomized controlled trial of a patient-centered intervention to improve emotional and
health-related outcomes of 19 patients with mild dementia and their family carers. The
intervention group exhibited significant decreases in decisional conflict compared to the
control group, as well as a clinically meaningful decrease in depression and better quality
of life (Hilgeman et al., 2014). Promising results were also reported in Whitlatch, Judge,
Zarit, and Femia’s (2006) dyadic counseling intervention, where 31 family care dyads
successfully participated in up to nine sessions focusing on values and preferences for
future care. The intervention was determined to be feasible and acceptable, and useful for
involving both members of the dyad in communicating about present and future care
decisions (Whitlatch et al., 2006). Silverstein and Sherman (2010) conducted an
educational intervention targeting family carers of persons with dementia, which resulted
in positive impacts on the feelings of the person with dementia about their participation and
on the family carer’s perception of the decision-making process. Finally, Murphy and Oliver
(2013) tested the effectiveness of a communication aid called ‘‘Talking Mats’’ in improving
decision-making among 18 family care dyads, and found that the intervention improved the
perceived involvement in decision-making among both persons with dementia and family
carers.

Discussion
The existing body of empirical literature concerning the decision-making process of family
care dyads indicates that not all persons with dementia are excluded from participating in the
decision-making process, but there is a broad spectrum of what may constitute shared
decision-making in dementia. Although none of the 36 studies included in this review

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

12 Dementia 0(0)

provided an explicit definition for shared decision-making in dementia, the defining feature
was the amount or type of the involvement of the person with dementia in the process.
Qualitative studies identified diverse patterns of the involvement of the person with
dementia. Some patterns related to the modifications a carer made to support the
autonomy of the person with dementia, including assisted or supported autonomy (Boyle,
2013; Samsi & Manthorpe, 2013) and ‘pseudo-autonomous decisions’ (Smebye et al., 2012).
Other patterns related to the wide range of positions occupied by the person with dementia
in the decision-making process: being free to make a choice (Tyrrell et al., 2006), being a
decision-making agent (MacQuarrie, 2005), being central to the process (Fetherstonhaugh
et al., 2013), being in or out of balance with carers (Keady et al., 2009), being listened to by
carers (Tyrrell et al., 2006), or being reliant upon carers (Horton-Deutsch et al., 2007).
Similarly among the quantitative studies in this review, the level of involvement ranged
from a dichotomous involved/not involved (Hirschman, Joyce, James, Xie, Casarett,
et al., 2005) to a categorical gradient of the person with dementia making final decisions,
participating equally in final decisions, or participating but carers making final decisions
(Karlawish et al., 2002). Thus, any type or amount of involvement of persons with dementia
currently constitutes shared decision-making in dementia.
Although most persons with dementia report wanting to participate in shared decision-
making with their family carers, many do not remain involved once their symptoms move
beyond mild dementia. As two of the longitudinal studies in this review concluded, shared
decision-making is a continuum on which the involvement of the person with dementia
declines over time and in tandem with cognitive function (Hirschman et al., 2004; Samsi
& Manthorpe, 2013). According to theoretical positions and empirical evidence
demonstrating the reliability and consistency of the person with dementia in self-reporting
values and preferences, the severity of cognitive impairment alone should not be the
determining factor of involvement in decision-making. Yet, as several studies indicated,
the severity of cognitive impairment is strongly correlated, and even predictive of, lower
levels of decision-making involvement. Although the views of family care dyads regarding
this phenomenon have yet to be explored, increasing severity of cognitive impairment likely
manifests in ways that are more apparent to family carers, which may lead carers to believe
that it is necessary or beneficial to assume control on their behalf.
Shared decision-making involvement also varies according to certain demographic
characteristics (education, age, gender, and type of kinship), psychosocial issues (quality
of life, depression, relationship strain, and carer burden), and the context and nature of
the decision at hand. Future research should focus on factors that are modifiable. Control
variables such as cognitive impairment and gender have been documented by previous
studies, and help identify family care dyads who need additional help in maintaining a
shared decision-making process. However, additional research on modifiable factors is
needed to further develop interventions to improve the involvement of persons with
dementia in decision-making.
Family carers recognize the need to increase their own involvement in decision-making as
the decision-making ability of the person with dementia declines, but findings from this
literature review indicate that persons with dementia may be prematurely excluded from
the process of making a variety of care decisions. The consequences of this premature
exclusion are great. When family carers perceive that persons with dementia are more
involved in decisions, family carers have better quality of life, less depression, less

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 13

negative strain, and are more congruent in their understanding of the values of the person
with dementia (Menne et al., 2008; Reamy et al., 2011). For persons with dementia, being a
part of the decision-making process may hold a grander meaning of validating their very
existence or personhood, regardless of the outcome or who makes the final decision
(Fetherstonhaugh et al., 2013). The process of decision-making is likely of as much if not
more importance to family care dyads than the outcomes.
In reviewing the existing body of literature on shared decision-making involvement
among family care dyads, it is apparent that additional research is needed that reflects the
perspective of persons with dementia, especially concerning the processes surrounding
decision-making in the acute care setting and regarding placement in long-term care
settings. Studies concerning everyday care decisions were exceptional in that all seven
included both members of the family care dyad. The process for making medical
treatment decisions has been examined from both perspectives of the dyad to some extent,
but no studies could be found that took place in an acute care or inpatient hospital setting,
where the majority of major medical treatment decisions are made. Studies examining long-
term care placement suggested that carers are responsible for the majority of this particular
decision-making process. However, considering that the seven studies focusing on the
process of long-term care decision-making did not explore the extent of involvement of
persons with dementia, it is unclear whether they are simply not very involved or whether
family carers of relatives with more severe dementia (thus limiting participation) were
overrepresented. It may be the case that this particular decision is more difficult for the
dyad to broach, and if persons with dementia view placement negatively, family carers may
feel compelled to make the decision without their input. Future research could untangle
these questions by including family carers of persons with early dementia, and by comparing
involvement across different types of decisions to determine whether long-term care
placement is indeed decided with less involvement from persons with dementia.
Until recently, much of the dementia decision-making literature has focused on either the
assessment of decision-making capacity of the person with dementia or the role of the
surrogate decision-maker. Early diagnosis of Alzheimer’s disease and other dementias will
continue to extend the time in which families have to prepare for decisions about everyday,
medical, and long-term care. A shared decision-making process provides opportunities for
both the person with dementia and the family carer to be involved and to express values or
preferences related to specific decisions. The body of literature on shared decision-making in
dementia reveals that persons with dementia are involved to varying degrees, but most are
prematurely excluded from decision-making due to disease-specific and non-modifiable risk
factors. Clinicians should offer support of shared decision-making to all family care dyads,
since cognitive impairment is a major risk factor for exclusion from decision-making.
Additional support should be offered to adult children carers, especially when carer
burden, relationship strain, or depression in either the person with dementia or the family
carer is evident. Future research uncovering additional modifiable risk factors will help with
the development of interventions targeted at family care dyads who need the most help in
maintaining both members’ involvement.

Conflict of interest
None declared.

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

14 Dementia 0(0)

Funding
This work was supported by John A Hartford Foundation’s National Hartford Centers of
Gerontological Nursing Excellence Award Program.

References
Adler, G. (2010). Driving decision-making in older adults with dementia. Dementia, 9(1), 45–60. DOI:
10.1177/1471301209350289
Arias, J. J. (2013). A time to step in: Legal mechanisms for protecting those with declining capacity.
American Journal of Law & Medicine, 39(1), 134–159.
Boyle, G. (2013). ‘She’s usually quicker than the calculator’: financial management and
decision-making in couples living with dementia. Health and Social Care in the Community,
21(5), 554–562. DOI: 10.1111/hsc.12044
Butcher, H. K., Holkup, P. A., Park, M., & Maas, M. L. (2001). Thematic analysis of the experience of
making a decision to place a family member with Alzheimer’s disease in a special care unit. Research
in Nursing & Health, 24, 470–480.
Caldwell, L., Low, L. F., & Brodaty, H. (2014). Caregivers’ experience of the decision-making process
for placing a person with dementia into a nursing home: Comparing caregivers from Chinese
ethnic minority with those from English-speaking backgrounds. International Psychogeriatrics,
26(3), 413–424. DOI: 10.1017/S1041610213002020
Caron, C. D., Ducharme, F., & Griffith, J. (2006). Deciding on institutionalization for a relative with
dementia: The most difficult decision for caregivers. Canadian Journal on Aging, 25(2), 193–205.
Chang, Y. P., & Schneider, J. K. (2010). Decision-making process of nursing home placement among
Chinese family caregivers. Perspectives in Psychiatric Care, 46(2), 108–118. DOI: 10.1111/j.1744-
6163.2010.00246.x
Couture, M., Ducharme, F., & Lamontagne, J. (2012). The role of health care professionals in the
decision-making process of family caregivers regarding placement of a cognitively impaired elderly
relative. Home Health Care Management & Practice, 24(6), 283–291. DOI: 10.1177/
1084822312442675
de Boer, M. E., Dröes, R.-M., Jonker, C., Eefsting, J. A., & Hertogh, C. M. P. M. (2012). Thoughts on
the future: The perspectives of elderly people with early-stage Alzheimer’s disease and the
implications for advance care planning. AJOB Primary Research, 3(1), 14–22. DOI: 10.1080/
21507716.2011.636784
Dening, K. H., Jones, L., & Sampson, E. L. (2013). Preferences for end-of-life care: A nominal group
study of people with dementia and their family carers. Palliative Medicine, 27(5), 409–417. DOI:
10.1177/0269216312464094
Dresser, R. S. (1992). Autonomy revisited: The limits of anticipatory choices. In R. H. Binstock, S. G.
Post & P. J. Whitehouse (Eds.), Dementia and aging: Ethics, values, and policy choices. Baltimore:
The Johns Hopkins University Press.
Feinberg, L. F., & Whitlatch, C. J. (2001). Are persons with cognitive impairment able to state
consistent choices? The Gerontologist, 41(3), 374–382.
Feinberg, L. F., & Whitlatch, C. J. (2002). Decision-making for persons with cognitive impairment
and their family caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 17(4),
237–244. DOI: 10.1177/153331750201700406
Fetherstonhaugh, D., Tarzia, L., & Nay, R. (2013). Being central to decision making means I am
still here!: the essence of decision making for people with dementia. Journal of Aging Studies, 27(2),
143–150. DOI: 10.1016/j.jaging.2012.12.007
Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). ‘‘Mini-mental state’’. A practical method for
grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3),
189–198.

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 15

Goodman, C., Amador, S., Elmore, N., Machen, I., & Mathie, E. (2013). Preferences and priorities for
ongoing and end-of-life care: A qualitative study of older people with dementia resident in care
homes. International Journal of Nursing Studies, 50(12), 1639–1647. DOI: 10.1016/
j.ijnurstu.2013.06.008
Gurrera, R. J., Karel, M. J., Azar, A. R., & Moye, J. (2007). Agreement between instruments for rating
treatment decisional capacity. American Journal of Geriatric Psychiatry, 15(2), 168–173.
Hamann, J., Bronner, K., Margull, J., Mendel, R., Diehl-Schmid, J., Buhner, M., . . . Perneczky, R.
(2011). Patient participation in medical and social decisions in Alzheimer’s disease. Journal of the
American Geriatric Society, 59(11), 2045–2052. DOI: 10.1111/j.1532-5415.2011.03661.x
Hilgeman, M. M., Allen, R. S., Snow, A. L., Durkin, D. W., DeCoster, J., & Burgio, L. D. (2014).
Preserving Identity and Planning for Advance Care (PIPAC): Preliminary outcomes from a patient-
centered intervention for individuals with mild dementia. Aging & Mental Health, 18(4), 411–424.
DOI: 10.1080/13607863.2013.868403
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., Casarett, D. J., & Karlawish, J. H. (2005).
Would caregivers of Alzheimer disease patients involve their relative in a decision to use an AD-
slowing medication? American Journal of Geriatric Psychiatry, 13(11), 1014–1021. DOI: 10.1176/
appi.ajgp.13.11.1014
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., & Karlawish, J. H. (2005). Do Alzheimer’s
disease patients want to participate in a treatment decision, and would their caregivers let them? The
Gerontologist, 45(3), 381–388.
Hirschman, K. B., Xie, S. X., Feudtner, C., & Karlawish, J. H. (2004). How does an Alzheimer’s
disease patient’s role in medical decision making change over time? Journal of Geriatric Psychiatry
and Neurology, 17(2), 55–60. DOI: 10.1177/0891988704264540
Horton-Deutsch, S., Twigg, P., & Evans, R. (2007). Health care decision-making of persons with
dementia. Dementia, 6(1), 105–120. DOI: 10.1177/1471301207075643
Jaworska, A. (1999). Respecting the margins of agency: Alzheimer’s patients and the capacity to value.
Philosophy and Public Affairs, 28(2), 105–138.
Jox, R. J., Denke, E., Hamann, J., Mendel, R., Forstl, H., & Borasio, G. D. (2012). Surrogate decision
making for patients with end-stage dementia. International Journal of Geriatric Psychiatry, 27(10),
1045–1052. DOI: 10.1002/gps.2820
Kapp, M. B. (2002). Decisional capacity in theory and practice: Legal process versus ‘bumbling
through’. Aging & Mental Health, 6(4), 413–417. DOI: 10.1080/1360786021000007054
Karel, M. J., Gurrera, R. J., Hicken, B., & Moye, J. (2010). Reasoning in the capacity to make medical
decisions: The consideration of values. Journal of Clinical Ethics, 21(1), 58–71.
Karel, M. J., Moye, J., Bank, A., & Azar, A. R. (2007). Three methods of assessing values for advance
care planning: comparing persons with and without dementia. Journal of Aging and Health, 19(1),
123–151. DOI: 10.1177/0898264306296394
Karlawish, J. (2008). Measuring decision-making capacity in cognitively impaired individuals.
Neurosignals, 16(1), 91–98. DOI: 10.1159/000109763
Karlawish, J. H. T., Casarett, D., Propert, K. J., James, B. D., & Clark, C. M. (2002). Relationship
between Alzheimer’s disease severity and patient participation in decisions about their medical care.
Journal of Geriatric Psychiatry and Neurology, 15(2), 68–72. DOI: 10.1177/089198870201500203
Keady, J., Williams, S., & Hughes-Roberts, J. (2009). Analysing decision-making: Bridging and
balancing. In D. O’Connor, & B. Purves (Eds.), Decision-making, personhood, and dementia:
Exploring the interface (pp. 147–158). London, UK: Jessica Kingsley Publishers.
Kensinger, E. A. (2009). Cognition in aging and age-related disease. Encyclopedia of Neuroscience,
1055–1061
Kim, S. Y., Karlawish, J. H., Kim, H. M., Wall, I. F., Bozoki, A. C., & Appelbaum, P. S. (2011).
Preservation of the capacity to appoint a proxy decision maker: Implications for dementia research.
Archives of General Psychiatry, 68(2), 214–220.

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

16 Dementia 0(0)

Kitwood, T. (1990). The dialectics of dementia: With particular reference to Alzheimer’s disease.
Ageing and Society, 10(2), 177–196.
Laakkonen, M. L., Raivio, M. M., Eloniemi-Sulkava, U., Tilvis, R. S., & Pitkala, K. H. (2008).
Disclosure of dementia diagnosis and the need for advance care planning in individuals with
Alzheimer’s disease. Journal of the American Geriatric Society, 56(11), 2156–2157. DOI: 10.1111/
j.1532-5415.2008.01987.x
Logsdon, R. G., Gibbons, L. E., McCurry, S. M., & Teri, L. (2002). Assessing quality of life in older
adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519.
MacQuarrie, C. R. (2005). Experiences in early stage Alzheimer’s disease: Understanding the paradox
of acceptance and denial. Aging & Mental Health, 9(5), 430–441. DOI: 10.1080/13607860500142853
Mak, W. (2011). Self-reported goal pursuit and purpose in life among people with dementia. Journals
of Gerontology Series B: Psychological and Social Science, 66(2), 177–184. DOI: 10.1093/geronb/
gbq092
Menne, H. L., Tucke, S. S., Whitlatch, C. J., & Feinberg, L. F. (2008). Decision-making involvement
scale for individuals with dementia and family caregivers. American Journal of Alzheimer’s Disease
& Other Dementias, 23(1), 23–29.
Menne, H. L., & Whitlatch, C. J. (2007). Decision-making involvement of individuals with dementia.
The Gerontologist, 47(6), 810–819.
Moye, J., Karel, M. J., Gurrera, R. J., & Azar, A. R. (2006). Neuropsychological predictors of
decision-making capacity over 9 months in mild-to-moderate dementia. Journal of General
Internal Medicine, 21(1), 78–83. DOI: 10.1111/j.1525-1497.2005.00288.x
Moye, J., & Marson, D. C. (2007). Assessment of decision-making capacity in older adults: An
emerging area of practice and research. Journals of Gerontology Series B: Psychological Sciences,
62B(1), 3–11.
Murphy, J., & Oliver, T. (2013). The use of Talking Mats to support people with dementia and their
carers to make decisions together. Health and Social Care in the Community, 21(2), 171–180. DOI:
10.1111/hsc.12005
O’Connor, D., Purves, B., & Downs, M. (2009). Decision-making and dementia: towards a social
model of understanding. In D. O’Connor, & B. Purves (Eds.), Decision-making, personhood, and
dementia: Exploring the interface (pp. 203–214). London, UK: Jessica Kingsley Publishers.
Orfei, M. D., Varsi, A. E., Blundo, C., Celia, E., Casini, A. R., Caltagirone, C., & Spalletta, G. (2010).
Anosognosia in mild cognitive impairment and mild Alzheimer’s disease: Frequency and
neuropsychological correlates. American Journal of Geriatric Psychiatry, 18(12), 1133–1140. DOI:
10.1097/JGP.0b013e3181dd1c50
Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global
prevalence of dementia: A systematic review and meta-analysis. Alzheimer’s & Dementia, 9(1),
63–75 e62. DOI: 10.1016/j.jalz.2012.11.007
Reamy, A. M., Kim, K., Zarit, S. H., & Whitlatch, C. J. (2011). Understanding discrepancy in
perceptions of values: individuals with mild to moderate dementia and their family caregivers.
The Gerontologist, 51(4), 473–483. DOI: 10.1093/geront/gnr010
Sabat, S. R. (2005). Capacity for decision-making in Alzheimer’s disease: selfhood, positioning and
semiotic people. Australian & New Zealand Journal of Psychiatry, 39(11–12), 1030–1035.
Samsi, K., & Manthorpe, J. (2013). Everyday decision-making in dementia: findings from a
longitudinal interview study of people with dementia and family carers. International
Psychogeriatrics, 25(6), 949–961. DOI: 10.1017/S1041610213000306
Silverstein, N. M., & Sherman, R. (2010). Taking control of Alzheimer’s disease: A training evaluation.
Gerontology & Geriatrics Education, 31(3), 274–288. DOI: 10.1080/02701960.2010.503136
Smebye, K. L., Kirkevold, M., & Engedal, K. (2012). How do persons with dementia participate in
decision making related to health and daily care? A multi-case study. BMC Health Services
Research, 12, 241. DOI: 10.1186/1472-6963-12-241

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015

XML Template (2014) [30.10.2014–10:16am] [1–17]
//blrnas3.glyph.com/cenpro/ApplicationFiles/Journals/SAGE/3B2/DEMJ/Vol00000/140065/APPFile/SG-DEMJ140065.3d (-
DEM) [PREPRINTER stage]

Miller et al. 17

Smith, A. K., Lo, B., & Sudore, R. (2013). When previously expressed wishes conflict with best
interests. JAMA Internal Medicine, 173(13), 1241–1245. DOI: 10.1001/jamainternmed.2013.6053
Sörensen, S., Mak, W., & Pinquart, M. (2011). Planning and decision making for care transitions.
Annual Review of Gerontology and Geriatrics, 31(1), 111–142.
St-Amant, O., Ward-Griffin, C., DeForge, R. T., Oudshoorn, A., McWilliam, C., Forbes, D.,. . .
Hall, J. (2012). Making care decisions in home-based dementia care: Why context matters.
Canadian Journal of Aging, 31(4), 423–434. DOI: 10.1017/S0714980812000396
Tyrrell, J., Genin, N., & Myslinski, M. (2006). Freedom of choice and decision-making in health
and social care: Views of older patients with early-stage dementia and their carers. Dementia,
5(4), 479–502. DOI: 10.1177/1471301206069915
Whitlatch, C. J., Feinberg, L. F., & Tucke, S. S. (2005). Measuring the values and preferences for
everyday care of persons with cognitive impairment and their families. The Gerontologist, 45(3),
370–380.
Whitlatch, C. J., Judge, K., Zarit, S. H., & Femia, E. (2006). Dyadic intervention for family caregivers
and care receivers in early-stage dementia. The Gerontologist, 46(5), 688–694.
Whitlatch, C. J., Piiparinen, R., & Friss Feinberg, L. (2009). How well do family caregivers know their
relatives’ care values and preferences? Dementia, 8(2), 223–243. DOI: 10.1177/1471301209103259
Wolfs, C. A., de Vugt, M. E., Verkaaik, M., Haufe, M., Verkade, P. J., Verhey, F. R., & Stevens, F.
(2012). Rational decision-making about treatment and care in dementia: A contradiction in terms?
Patient Education and Counseling, 87(1), 43–48. DOI: 10.1016/j.pec.2011.07.023

Lyndsey M. Miller, RN, BSN, is a PhD candidate at the School of Nursing, Oregon Health
& Science University, Portland, OR, USA. In her dissertation study, she is examining the
care values and decision-making involvement of hospitalized persons with dementia,
incongruence among family care dyads, and family carers’ preparation for future
dementia care.

Carol J. Whitlatch, PhD, is Assistant Director of the Margaret Blenkner Research Institute
of the Benjamin Rose Institute on Aging. For over 25 years she has studied a variety of
topics related to family caregiving including: developing and evaluating interventions, and
choice and decision-making in diverse caregiver-care receiver dyads. Dr Whitlatch is an
Adjunct Associate Professor of Sociology at Case Western Reserve University.

Karen S. Lyons, PhD, is an Associate Professor at the School of Nursing, Oregon Health &
Science University, with a secondary appointment at the School of Medicine. Dr Lyons’
background is in psychology with a PhD in Human Development and Family Studies. Her
research focuses on family care dyads involving middle-aged and older adults, with
particular emphasis on symptom incongruence, shared appraisal, and dyadic adjustment.

Downloaded from dem.sagepub.com at CAMBRIDGE UNIV LIBRARY on October 29, 2015