Conceptualizing communication enhancement in dementia for family caregivers using the WHO-ICF framework

Abstract

Despite the importance of educating and training family caregivers about the language and communication changes associated with Alzheimer's Disease (AD), a comprehensive framework for interventions has not been put forward to date. There are three objectives of this paper. The first is to review the World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF) conceptual framework. The second objective is to provide a detailed description of the ICF as it relates to the language and communication changes experienced by individuals with AD that family caregivers find stressful. The third is to discuss the use of the ICF in the development and implementation of language and communication enhancement education and training programs for family caregivers of individuals with AD. The ICF provides a comprehensive framework, offers a universal language, includes the family caregiver as a potential support or barrier, and necessitates a consideration of the everyday communication activities and participation of individuals with AD. The ICF will require more explicit considerations of the subjective experience of disability and further exploration of the concept of third-party disability. Empirical testing of communication enhancement interventions based on the ICF framework will be needed as well as an increased acceptance and incorporation into clinical practice by speech language pathologists and other health care professionals.

Full text

Conceptualizing communication enhancement in dementia for family
caregivers using the WHO-ICF framework
KERRY BYRNE & J. B. ORANGE
University of Western Ontario, London, Ontario, Canada
Abstract
Despite the importance of educating and training family caregivers about the language and communication changes
associated with Alzheimer’s Disease (AD), a comprehensive framework for interventions has not been put forward to date.
There are three objectives of this paper. The first is to review the World Health Organization’s (WHO) International
Classification of Functioning, Disability and Health (ICF) conceptual framework. The second objective is to provide a detailed
description of the ICF as it relates to the language and communication changes experienced by individuals with AD that
family caregivers find stressful. The third is to discuss the use of the ICF in the development and implementation of language
and communication enhancement education and training programs for family caregivers of individuals with AD. The ICF
provides a comprehensive framework, offers a universal language, includes the family caregiver as a potential support or
barrier, and necessitates a consideration of the everyday communication activities and participation of individuals with AD.
The ICF will require more explicit considerations of the subjective experience of disability and further exploration of the
concept of third-party disability. Empirical testing of communication enhancement interventions based on the ICF
framework will be needed as well as an increased acceptance and incorporation into clinical practice by speech language
pathologists and other health care professionals.
Keywords: Dementia, communication, enhancement, family caregivers, WHO-ICF.
Introduction
It is estimated that in 2005, 420,600 Canadians 65
years of age and older have dementia (CSHA, 1994).
This represents nearly 1.3% of Canada’s entire
population of approximately 32 million, of which
over 12.5% are 65 years of age and older. Of all
Canadian adults with dementia, approximately
280,000 have Alzheimer’s disease (AD), one of
many different types of dementia (CSHA, 1994). A
recent incidence study based on a national preva-
lence data set shows there are 60,150 new cases of
dementia diagnosed each year in Canada (CSHA,
2000), of which 39,000 are new cases of AD. By
2031, over 3=4million Canadians are expected to
have AD and related dementias (CSHA, 1994).
These figures are similar to worldwide prevalence
and incidence data showing exponential-like rises in
the occurrence of dementia in all of its forms.
Family members and friends are the main source
of care for individuals with Alzheimer’s disease who
live in the community (CSHA Working Group,
1994). Family members providing care to a relative
with AD are at risk for physical, psychological,
psychosocial and financial strains (Ory, Hoffman,
Yee, Tennstedt & Schulz, 1999; Schulz & Beach,
1999; Schulz & Martire, 2004; Schulz, O’Brien,
Bookwala & Fleissner, 1995). Communication diffi-
culties are among some of the first symptoms of
dementia reported by family caregivers (Bayles &
Tomoeda, 1991) and family caregivers rate them as
highly problematic (Murray, Schneider, Banerjee
& Mann, 1999; Orange, 1995; Quayhagen &
Quayhagen, 1988; Rabins, Mace & Lucas, 1982).
Repetitive question asking (Powell, Hale & Bayer,
1995; Quayhagen & Quayhagen, 1988), semantic
difficulties such as word finding (Orange, 1995),
discourse related difficulties (e.g., lack of conversa-
tion) (Murray et al., 1999; Orange, 1995), the
inability to communicate with their relative as they
had done in the recent past (Williamson &
Schulz, 1993) and communication difficulties im-
pacting activities of daily living (Small, Geldart &
Gutnam, 2000) are identified as problematic by
family caregivers. Murray et al. (1999) conducted
280 semi-structured interviews with spouses of
Correspondence: Kerry Byrne, MA, University of Western Ontario, Elborn College, Rehabilitation Sciences, London, Ontario, N6G 1H1, Canada.
E-mail: kbyrne4@uwo.ca
Advances in Speech–Language Pathology, December 2005; 7(4): 187 – 202
ISSN 1441-7049 print/ISSN 1742-9528 online ªThe Speech Pathology Association of Australi a Limited
Published by Taylor & Francis
DOI: 10.1080/14417040500337062

individuals with dementia. Spouses reported that the
most frequent difficult aspect of their relative’s
dementia that they had to cope with was the loss of
their relative’s language and communication. Sixty-
eight respondents, or 24% of the spousal participants,
identified language and communication problems as
one of the most difficult aspects of dementia to deal
with, over and above loss of memory, aggression and
uncooperative/stubborn behaviours.
Communication problems also have been linked
to difficult behaviours such that communication
problems mediated the relationship between cogni-
tive and functional status and problem behaviours
(Savundranagam, Hummert & Montgomery, 2005).
Communication difficulties have been linked to
agitation (Hart & Wells, 1997) in individuals with
AD. Not surprisingly, Turner and Street (1999)
noted that family caregivers want information on
how best to communicate with their relatives with
dementia (60%) and how best to manage difficult
behaviours (77%).
Family caregivers of individuals with AD report
employing communication and language strategies
with their relatives even without formal communica-
tion training (Richter, Roberto & Bottenberg, 1995;
Baxter, Braithwaite, Golish & Olson, 2002). Family
caregivers have been observed doing so in natural
and experimental settings (Hendryx-Bedalov, 1999;
Jansson, Nordberg & Grafstro¨ m, 2001; Kemper,
Anagnopoulos, Lyons & Heberlein, 1994; Small,
Gutman, Makela & Hillhouse, 2003) and have been
trained successfully to communicate more appro-
priately with their relatives who have AD (Bourgeois,
Burgio, Schulz, Beach & Palmer, 1997; Ripich, Ziol,
Fritsch & Durand, 1999).
Communication enhancement education and
training programs for family caregivers are important
because they make it possible to identify stressful
communication problems. It also mitigates caregivers’
unrealistic expectations regarding communication
with their relatives with AD (Tomoeda, 2001). It is
imperative for the success of communication and
language interventions that family caregivers under-
stand that the communication and language changes
in AD are a result of pathological changes to the brain.
This knowledge helps them to realize that their
relatives with AD are not making premeditated
attempts to fake them (Clarke, 1991) or to annoy
intentionally (Bourgeois, 2002).
Despite the fact that several researchers stress the
importance of (a) educating family caregivers about
the communication and language changes associated
with AD (Orange, Ryan, Meredith & Maclean, 1995;
Ripich, 1994; Ripich, Wykle & Niles, 1995; Small &
Gutman, 2002) and (b) training caregivers how to
enhance communication (Santo-Pietro & Ostuni,
2003), a comprehensive framework for interventions
has not been put forward to date. The purpose of
this paper is first to review the World Health
Organization’s (WHO) International Classification
of Functioning, Disability and Health (ICF ) con-
ceptual framework. We will provide a detailed
description of the ICF as it relates to those
communication and language changes experienced
by individuals with AD that family caregivers find
stressful. Finally, we will discuss the use of the ICF in
the development and implementation of commu-
nication and language enhancement education and
training programs for family caregivers of individuals
with AD.
Overview: WHO – ICF
The ICF is part of the WHO’s family of international
classification systems (WHO, 2001). Its predecessor,
the International Classification of Impairment, Disabil-
ity and Handicap (ICIDH) (WHO, 1980) was
criticized heavily because of its linear conception of
health and disability and its sole focus on the
individual as the source of the disability. The ICF
is a more current conceptualization that synthesizes
medical and social models of disability. It is a
biopsychosocial approach to the study and classifica-
tion of health and health-related states and describes
health and health-related states at the level of the
body, individual and society. The ICF is both a
conceptual framework and a detailed classification
system that supports simultaneously both functions.
It is discussed and evaluated in the literature based
on both purposes. For more information about the
ICF classification system as it relates to communica-
tion disability, readers are referred to an excellent
series of papers published in the March 2004 issue of
this journal.
The ICF consists of two parts, each one compris-
ing two components. The first part consists of
functioning and disability. It includes the compo-
nents of body functions and body structures and
activities and participation. Body functions comprise
the physiological and psychological functions of
body systems. Body structures refer to anatomical
parts such as organs and limbs. Impairments are
defined as problems in body function or structure
that represent a significant deviation or loss (WHO,
2001).
Activities are defined as the execution of a task or
action by individuals (WHO, 2001). Participation
refers to involvement in life situations (WHO, 2001).
Individuals can experience activity limitations and
participation restrictions, that is, difficulty executing
a task or action and problems regarding involvement
in life situations, respectively. Activities and partici-
pation are further expanded based on the concepts of
‘‘performance’’ and ‘‘capacity’’. Performance reflects
what individuals do in their current environments.
Capacity represents individuals’ abilities to execute a
task or action given environments that are suppor-
tive. The differences between performance and
capacity are good indicators of how individuals’
environments can be adjusted to allow for improve-
ments in performance.
188 K. Byrne & J. B. Orange

Part 2 of the ICF consists of contextual factors
including environmental and personal factors. Envi-
ronmental factors are external to individuals and
influence body functions/structures and activities/
participation components. Environmental factors are
composed of individuals’ physical, social and attitu-
dinal environments in which there are both
facilitators and barriers. Environmental factors also
include individual (i.e., immediate environment) and
societal (i.e., social structures, services and systems
that impact the individual) considerations on health
and health conditions.
Personal factors comprise aspects that are not part
of the individual’s health condition(s). Rather, they
include background variables that influence health
and associated conditions. Examples of personal
factors include gender, race, age, coping styles, social
background and education. They are not included in
the classification system of the ICF. The reason for
this is primarily because of the large social and
cultural variances involved in potential factors
(Schneidert, Hurst, Miller & Ustun, 2003).
One of the key features of the ICF framework is
that it identifies interactions among health condi-
tions, body functions and structures, activities and
participation, and acknowledges the influence of
environmental and personal factors on health and
health conditions. The conceptual framework of the
ICF emphasizes that functioning and disability are
not linear but rather that all components are related
to and consequently influence one another
(Bickenbach, Chatterji, Badley & Ustun, 1999).
This is a positive, crucial aspect of the ICF frame-
work because it posits, for example, that an
impairment in body structure(s) and function(s)
can be experienced by individuals in myriad ways,
depending on how activities and participation
components are manifested and how environments
serve as facilitators or barriers to the experiences of a
particular health condition.
The ICF framework is being applied as a statistical,
research, clinical, social policy and educational tool
in health care and is touted as a useful conceptua-
lization for understanding and developing
interventions for a variety of communication and
language related disorders (Arthanat, Nochajski, &
Stone, 2004; Ball, Beukelman & Pattee, 2004;
Bourgeois, 1998; Brush, Threats, & Calkins, 2003;
Eadie, 2003; McCooey-O’Halloran, Worrall &
Hickson, 2004; Simeonsson, 2003; Simeonsson,
Leonardi, Lollar, Bjorck-Akesson, Hollenweger
& Martinuzzi, 2003; Simmons-Mackie, 2004;
Simmons-Mackie, Threats, & Kagan, 2005; Threats,
2004; Worrall & Frattali, 2000; Yaruss & Quesal,
2004;). The ICF framework is adopted by the
American Speech-Language Hearing Association
(ASHA, 2001) and is being proposed by Speech
Pathology Australia (SPA, 2002) as a basis for
defining the scope of practice of speech-language
pathologists. Brush et al. (2003) used the ICF as a
basis for developing a comprehensive treatment plan
for a hypothetical case study of an individual with
AD residing in a nursing home. However, its direct
application and evaluation for use as a means of
understanding the communication and language
changes identified as problematic by family care-
givers of individuals with AD and developing
interventions to address these problems has not been
undertaken to date.
The ICF, language and communication, and
AD: Functioning and disability
Body structures
Body structures that are related to the communica-
tion and language changes associated with AD
include structures of the central nervous system.
The hallmark neuropathological feature of AD is the
progressive accumulation of insoluble protein in the
form of extracellular amyloid and intraneuronal
neurofibrillary changes (Braak & Braak, 1991; Braak,
Braak, & Bohl, 1993). Braak and Braak (1991)
autopsied the brains of 83 individuals with and
without dementia. They noted the accumulation of
amyloid plaques and neurofibrillary changes in the
form of neuritic plaques, neurofibrillary tangles and
neuropil threads. Although the distribution of
neuritic plaques varied widely among individual
brains, neurofibrillary tangles and neuropil threads
demonstrated a characteristic pattern of distribution
that yielded the development of six stages of the
disease based on neurofibrillary changes (see Braak
& Braak, 1991 for descriptions of the stages). These
neuropathological changes begin in the medial
temporal lobe regions including the transentorhinal
cortex and entorhinal cortex, progress to the
hippocampus and in the later stages of the disease
spread through the neocortex and limbic system
(Braak & Braak, 1995; Flashman, Wishart, Oxman &
Saykin, 2003). The pathological changes result in
structural impairments that impact cognitive func-
tions such as memory, language functions such as
semantic processes, and have a devastating effect on
an individual’s ability to communicate.
Body functions
The body functions of the ICF framework relevant to
the communication and language changes in AD
include the specific mental functions of memory,
attention, executive functions (e.g., planning and
carrying out tasks), critical thinking, and language,
among others. Bayles (2001) states that ‘‘cognition
makes communication possible’’ (p. 254). Several
authors provide thorough discussions of the impair-
ment to specific mental functions as they pertain to
communication and language in AD including
declarative memory (Azuma & Bayles, 1997;
Communication enhancement in dementia for family caregivers 189

Bayles, 2003; Bayles & Kim, 2003; Dalla Barba
& Boller, 1998) and attention and higher-level
executive functions (Orange & Purves, 1996).
Cognitive functions, particularly memory systems
and processes, greatly affect communication and
language abilities of individuals with AD (Bayles,
2001; Bourgeois, 2002; Orange & Purves, 1996).
Bourgeois (2002) offers a detailed review of both
impaired and retained memory systems and pro-
cesses and the resulting impact on communication
and language in individuals with dementia. Orange
and Purves (1996) discuss cognitive functions,
namely attention and memory systems and manip-
ulation of knowledge, associated with impairments in
the conversational discourse of individuals with AD.
In their application of the ICF to cognitive disorders,
Arthanat et al. (2004) present a case study of a
woman in the early stage of AD using ICF codes to
describe her cognitive deficits. The authors explain
how specific mental function limitations and cap-
abilities are coupled with the language and
communication problems and retained abilities in
individuals with AD.
Many of the communication difficulties identified
by family caregivers, such as repetitive question
asking and conversational problems, are thought to
be related to declarative working memory impair-
ments, and problems in sustained and switching
attention systems and processes (Bayles, 2001;
Orange & Purves, 1996). Bourgeois (2002) remarks
that because the sentences of individuals with AD are
normally intact in terms of phonology and syntax,
family caregivers may not realize the presence of the
underlying cognitive difficulties. For more detailed
discussions of cognitive impairments in AD the
reader is referred to Craik and Salthouse (2000).
In the ICF framework, the mental processes
supporting language are defined as ‘‘specific mental
functions of recognizing and using signs, symbols
and other components of a language’’ (WHO, 2001,
p. 58) including reception of language, expression of
language and integrative language functions. A
general overview is outlined below of the language
and communication of individuals with AD relative
to the WHO’s ICF body functions component,
focusing on repetitive verbalizations and word find-
ing difficulties because both are identified as
particularly problematic by family caregivers
(Orange, 1995; Powell et al., 1995; Quayhagen &
Quayhagen, 1988).
Verbal perseveration is defined as ‘‘the inappropri-
ate repetition of part or all of a previous response’’
(Bayles, Tomoeda, McKnight, Helm-Estabrooks &
Hawley, 2004, p. 336). In both natural and experi-
mental situations, individuals with AD are observed
repeating statements and questions (Bayles et al.,
2004; Bourgeois et al., 1997). In a study by Bourgeois
et al. (1997) family caregivers reported that repetitive
verbalizations were highly problematic, including
repeated requests to go out, asking the same question
over and over again, and asking to leave their house
to go home. One participant in the study averaged
over 200 repetitions a day. The following quote from
the spouse of an individual with AD summarizes the
stress of the reiterative problems in AD:
I cannot confide in him anymore. It upsets him, and he
couldn’t understand. We talk about simple things – what
to wear, what day it is, what time it is. I have been
exhausted by his repeated questions (Wright, 1993,
p. 49).
In two experimental studies, Bayles and colleagues
found that participants with AD perseverated signifi-
cantly more often than normal older adults (Bayles,
Tomoeda, Kaszniak, Stern & Eagans, 1985; Bayles
et al., 2004). They noted that the rate of perseveration
for individuals with AD was significantly higher on a
generative naming task (e.g., naming methods of
transportation) than on confrontation naming and
picture description tasks. Generative naming is
considered a more cognitively difficult task placing
high demands on attention systems and processes and
semantic memory and its processes.
Semantic impairments are a well-established find-
ing in individuals with AD (Emery, 2000; Kemper,
1997). Most researchers agree that semantic cap-
abilities more vulnerable to decline than are
phonology or syntax (Bayles, 1982; Bayles & Boon,
1982; Bayles & Tomoeda, 1983; Delazer, Semenza,
Reiner, Hofer & Benke, 2003; Kemper et al., 1994).
Numerous studies show that object and picture
naming (Bayles & Tomoeda, 1983; Huff, Corkin &
Growdon, 1986; Lukatela, Malloy, Jenkins & Cohen,
1998; Williamson, Adair, Raymer & Heilman, 1998)
are impaired in individuals with AD as well as verbal
and letter fluency skills (Chertkow & Bub, 1990;
Diaz, Sailor, Cheung & Kuslansky, 2004; Henry,
Crawford & Phillips, 2004). There is a wide range of
explanations to account for the semantic deficits
present in AD. Some investigators contend that there
is progressive loss of semantic knowledge (Chertkow,
Bub & Seidenberg, 1989; Hodges, Salmon &
Butters, 1992) while others believe that semantic
knowledge is intact but conscious access to semantic
information is impaired (Nebes, 1992; Nicholas,
Obler, Au & Albert, 1996). Further research is
needed to understand fully the nature of the
semantic deficits present in individuals with AD.
Notably, much of the research on the impaired
mental functions of language and communication in
AD is based on the medical model of disability.
From this perspective, language and communication
are discussed as impairments at the individual level,
with emphasis on language impairments from a body
structure/function level. Impairment level research
should be concerned with how language impair-
ments affect communication activities and
participation if it is to offer useful information
to family caregivers. For instance, Emery (2000)
190 K. Byrne & J. B. Orange

provided a detailed review of the language impair-
ments experienced by individuals with AD. She
organized findings according to a semiotic language
framework, starting with simple units of language
and moving to more complex aspects in the fol-
lowing order: phonology, morphology, syntax and
semantics. Emery (2000) concluded more complex
levels of language processing are impacted more
than those requiring fewer demands on cognitive
systems and processes responsible for language pro-
cessing. Although Emery’s review is useful from a
language impairment perspective, it is largely based
on a medical model focused on body functions. The
biopsychosocial framework provided within the
ICF requires researchers and clinicians to consider
language and communication impairments in the
context of the individual’s environments, consider-
ing the resulting activity limitations and partici-
pation restrictions that may result from these
impairments.
Activities and participation
Threats (2004) equated the activities (i.e., execution
of a task) and participation (i.e., involvement in a life
situation) components of the ICF with global
communication behaviours whereas body functions
reflect the mental aspects of language processing
such as grammar and syntax. Worrall and Hickson
(2003) argue that functional communication ap-
proaches are categorized within the activities/
participation components in the ICF, pointing out
that rehabilitation efforts must consider language
impairments within the context of their influence on
everyday activities and participation. The conceptua-
lization of activities and participation as either
separate or overlapping constructs is a source of
continued debate. The developers of the ICF do not
agree on whether to represent these as distinct or
overlapping constructs. The ICF offers users four
choices ranging from (1) treating activities and
participation components with no overlap; (2) partial
overlap; (3) detailed categories treated as activities
and broad categories considered as participation; and
(4) total overlap (WHO, 2001). Threats and Worrall
(2004a) state that there is a trend toward treating
activities and participation as completely overlapping
constructs. Eadie (2003) suggests that the overlap
between activities and participation components
exists because individual communication activities
often interact with societal participation. She notes
that to communicate, a partner is required which, in
turn, necessitates the societal component. For the
remaining sections of this paper, activities and
participation will be treated as overlapping constructs
because the dyadic nature of communication,
particularly in AD, is best represented by this
conceptualization.
Nine activities/participation domains are identified
in the ICF. These include learning and applying
knowledge, general tasks and demands, communica-
tion, mobility, self-care, domestic life, interpersonal
interactions and relationships, major life areas and
community, social and civic life. Even though
communication is identified in only one domain of
the activities/participation component of the ICF, the
ability to communicate clearly plays a crucial role
in other domains of activities and participation.
For instance, the following activities/participation
included in the ICF can be influenced by commu-
nication: learning and applying knowledge, general
tasks and demands, self-care, domestic life, inter-
personal interactions and relationships, major life
areas and community, social, and civic life (Threats
& Worrall, 2004a; Worrall & Hickson, 2003;
Worrall, McCooey, Davidson, Larkins, & Hickson,
2002).
Communication
Communication is identified in the activities/
participation component of the ICF framework and
refers to ‘‘general and specific features of commu-
nicating by language, signs and symbols, including
receiving and producing messages, carrying on
conversations, and using communication devices
and techniques’’ (WHO, 2001, p. 133). Conversa-
tion in the ICF is defined as ‘‘Starting, sustaining and
ending an interchange of thoughts and ideas, carried
out by means of spoken, written, sign or other forms
of language, with one or more people one knows or
who are strangers, in formal or casual settings’’
(WHO, 2001, p. 135).
Bayles and Boone (1982) report that language
impairments in AD may not be clinically apparent in
the early stages in casual conversation because there
is a reliance on the use of cliche´s and other well
practiced verbal scripts. In general, the utterances of
individuals with AD are described as syntactically
and phonologically correct, but oral discourse is
sometimes vague and semantically empty (Bayles,
1982; Kemper et al., 1994). Throughout the disease,
to varying degrees, discourse becomes fragmented
and irrelevant (Causino, Lamar, Obler, Knoefel &
Albert, 1994) with difficulty shifting conversational
topics (Garcia & Joanette, 1997) and problems
introducing and maintaining topics (Mentis,
Briggs-Whittaker & Gramigna, 1995). Retained skills
are noted in the discourse of individuals with AD. In
the early stage of AD, individuals adhere to
conversational rules such as turn taking, maintaining
and ending turns (Orange & Purves, 1996; Ripich,
Vertes, Whitehouse, Fulton & Ekelman, 1991). In
the middle stages of AD, individuals are able to
contribute to conversation meaningfully, and retain
abilities such as greeting and taking turns in
conversation. However, irrelevant utterances, pro-
blems in topic maintenance and lack of content are
reported (Orange & Purves, 1996; Ripich et al.,
1991). In the later stages, language impairments are
Communication enhancement in dementia for family caregivers 191

very obvious, but abilities in the areas of syntax,
grammar and phonology are preserved (Hopper,
Bayles & Kim, 2001). Both early and middle clinical
stage individuals with AD are able to signal
misunderstandings of conversation problems and to
correct the problems to varying degrees of success
(Orange, Lubinski & Higginbotham, 1996; Orange,
VanGennep, Miller & Johnson, 1998; Watson,
Chenery & Carter, 1999).
Spoken language comprehension is not well-
understood in individuals with AD. A decline in
the ability to comprehend spoken language has
implications for participating in conversation, deriv-
ing meaning from television and radio programs
and following instructions such as health care advice
(Welland, Lubinski & Higginbotham, 2002).
Biassou, Onishi, Grossman and D’Esposito (1995)
found that individuals with AD demonstrate more
difficulty comprehending inferential versus factual
material. Welland et al. (2002) investigated informa-
tion saliency comprehension, defined as under-
standing main ideas versus details, in narrative
discourse among individuals with early and middle
stage AD and individuals with no brain damage.
They found that all participants demonstrated
similar patterns, scoring higher on comprehension
of main ideas versus the details. As well, all
participants scored higher on a test of comprehen-
sion for stated information as compared to implied
information. The individuals with AD, however,
were better able to understand information related to
the main ideas in narratives than information related
to the details. The clinical implication of these
findings, according to the authors, is that clinicians
should encourage caregivers to initiate conversation
with a main topic and to refer back to this main topic
throughout the conversation, particularly when
individuals with AD indicate that they do not
understand or have forgotten the conversational
topic (Welland et al., 2002).
There are few published studies that highlight the
everyday communication (i.e. functional communi-
cation) of individuals with AD. Bourgeois (1998)
reports that the most developed measurement area in
assessing the language and communication skills of
individuals with dementia is at the level of impair-
ment. Further, she contends that more assessment
tools examining participation are needed because
current measures are psychometrically weak and
insensitive for capturing clinically significant change.
The scant published literature outlining the every-
day communicative functioning of individuals with
communication disorders prompted Worrall and
colleagues (2002) to investigate the then available
functional assessments of communication and the
utility of the ICIDH’s (most recent publication of the
frameworks at the time of publication) activity and
participation components to reflect typical everyday
communication. The authors used participant ob-
servation to document the everyday communicative
functioning of clients with traumatic brain injury
(TBI) and aphasia in acute care settings. They
concluded that many communication activities iden-
tified as important by participants are not reflected in
commonly used functional communication scales
such as the American Speech-Language-Hearing
Association – Functional Assessment of Commu-
nication Skills for Adults (Frattali, Thompson,
Holland, Wohl & Ferketic, 1995). Worrall et al.
(2002) argued that the WHO framework should
include detailed communication codes that demon-
strate the complexity of communication in a range of
contexts, particularly if the aim of the framework is to
capture communication that is meaningful to clients.
They proposed a model describing communication
activities and participation that captures functional
communication along a continuum of context and
complexity: generic or simple activities (e.g., greet-
ings); population-specific or more complex activities
(specific to an impairment or setting); and indivi-
dualized activities focusing on the specific
communication needs of clients (e.g., initiating and
maintaining conversations with a friend). Lomax,
Brown and Howard (2004) examined the ICF
framework components of activities/participation of
individuals with neurodegenerative disorders includ-
ing individuals with AD, Parkinson’s disease with
dementia and dementia with Lewy bodies. The
authors used a semi-structured interview method,
the ‘‘Yesterday Interview’’, aimed at reconstructing
the preceding 24-hour period and targeting activity,
social and environmental contexts and subjective
enjoyment. Activities, coded using the ICF activity/
participation domains, included movement, self care,
domestic life areas, major life areas (work), learning
and applying knowledge, interpersonal interactions
(social), community and social and civic life (com-
munity). The investigators added an additional
category termed ‘‘passive activity’’ to reflect day-
time rest or sleep, doing nothing and time spent
sitting in front of the television. Communication was
not identified directly as an activity, however,
interpersonal interactions that were coded included
social interaction (i.e., conversing with others). They
found that for groups where dementia was a feature
of the disease, there were high levels of passive
activity. The AD participants demonstrated lower
levels of enjoyment relative to all other groups.
Future studies using methodologies such as the
‘‘Yesterday Interview’’ and participant observation
techniques, such as Dementia Care Mapping (Innes,
2003), and the Participating in Choice approach
developed by Worrall and Davidson (2000) will be
critical to advance our understanding of the real life
everyday communicative activities engaged in by
individuals with AD and their caregivers and will
inform the development of effective language and
communication enhancement programs.
Two studies addressed communication within the
context of activities of daily living (ADL) and
192 K. Byrne & J. B. Orange

independent activities of daily living (IADL) of
individuals with AD. Employing focus group meth-
odology, Small et al. (2000) asked family caregivers
of individuals with dementia to consider the com-
munication difficulties they experience with their
relatives during ADL and during other activities in
which they find communication problematic. Care-
givers reported conversation involving personal life
issues and using the telephone as the most affected.
Half of the caregivers stated that using the bathroom,
planning an agenda, locating an item and meal
preparation also were problematic. The majority of
activities were mentioned either once or twice by
each caregiver with the exception of conversation
which was identified, on average, three times per
caregiver.
Nygard and Starkhammar (2003) stressed the
importance of telephone use for older adults as key
to maintaining a social network and to obtaining
assistance when needed. They identified commu-
nication as the crucial element for telephone use.
They conducted interviews and in-home observa-
tions of 10 independent, community-dwelling
individuals with dementia to determine the difficul-
ties and response strategies in telephone use. They
found that verbal communication, namely word-
finding problems and difficulty expressing themselves
verbally, are barriers. The participants with dementia
identified strategies to overcome their verbal com-
munication problems including reading aloud letters,
reading telephone directories and using written cues.
The authors noted that being unable to use the
telephone presents a risk in emergencies and limits
social contact. What remains unknown relative to
language and communication activities/participation
in AD is how communication-related activity limita-
tions and participation restrictions influence other
activities such as going to church and participating in
social functions. Further research is needed if we are
to understand fully the impact of language and
communication impairment on the lives of those
with AD and their family caregivers.
Interpersonal relationships
Especially pertinent to family caregivers and com-
munication in AD is the ICF activities/participation
section on interpersonal interactions and relation-
ships, specifically family relationships and intimate
relationships. Family caregivers of individuals with
AD have identified communication as problematic in
their relationships (e.g., Murray et al., 1999; Orange,
1995), suggesting that individuals with AD experi-
ence difficulties in their interactions with others as a
result of communication problems. Orange (1995)
noted that family members of individuals with AD
report frustration, loneliness, guilt, embarrassment
and social isolation as a result of their relative’s
verbal and comprehension difficulties. Murray et al.
(1999) found that spousal caregivers of individuals
with dementia report a loss of intimacy due to
communication problems. The following quote from
a spousal caregiver exemplifies the impact that
communication can have on intimate relationships:
He is not the man he once was. You lose your husband.
When I come home now, full of stories, I don’t tell
them. It takes such a long time to explain. His language
is seriously affected, understanding as well as saying
things (Murray et al., 1999, p. 664).
The following statement by a family member of an
individual with middle stage AD suggests that
participation opportunities can be affected relative
to the communication abilities of the individual with
DAT:
. . . . . .We can go with the crowd (at church social
functions) but thing is, I find him sitting back in a corner
not interacting. I feel rotten. I feel guilty. I think, now
there he’s sitting in the corner by himself, I should be
sitting there too, but then, I mean, I don’t . . . . (Orange,
1995, p. 184).
Burgener and Dickerson-Putnam (1999) exam-
ined the perspectives of individuals with AD relative
to the effects of the disease on their relationships with
family and friends. Participants with AD expressed
fears of social embarrassment and not being able to
express themselves coherently. They reported avoid-
ing conversations they could not follow and laughing
to mask their inability to understand questions asked
of them. Participants also identified the feeling that
friends avoid them. Several participants with AD
indicated a ‘‘dropping off’’ of friends. The inability
to communicate as before can influence whether
friends come around as often. A study of individuals
with AD in a long-term care setting revealed a
moderate correlation between receptive language
impairment and increased social withdrawal of
individuals with dementia in long-term care facilities
(Potkins, Myint, Bannister, Tadros, Chithramohan,
Swann et al., 2003). In addition, both receptive and
expressive language impairment were associated
with decreased participation in social activities
(Potkins et al., 2003). Collectively, these findings
highlight the devastating and pervasive effects that
language and communication difficulties can have on
participation in many aspects of life for individuals
with AD.
The ICF, language and communication and
AD: Contextual factors
Environmental factors
Rather than portraying communication disability as a
feature of the individual with AD, the ICF provides a
perspective of viewing communication disability as
Communication enhancement in dementia for family caregivers 193

an outcome of the interaction between the person
with AD and his/her environment. Disability out-
comes are examined as interactions among the
language and communication impairments, activity
limitations, participation restrictions and the con-
textual factors (i.e., environmental and personal
factors) of the individual with AD. Environmental
factors reflect both immediate (e.g., communication
assistive devices) and broader societal features (e.g.,
attitudes towards those with AD) (Schneidert et al.,
2003). Including environment as a core feature in the
ICF reflects the shift in thinking from the individual
who needs intervention to ‘fit in’ with society (as
conceptualized in ICIDH ) to the idea that interven-
tion should encompass interventions at individual
and societal levels (as conceptualized in the current
iteration of the ICF ). This approach holds important
implications for the development of communication
enhancement education and training programs for
family caregivers of individuals with AD because it
emphasizes the importance of a communication
environment that is supportive in the immediate
individualized sense, for example, through providing
communication devices that target specific needs,
and also helping to develop, societal attitudes that are
not stigmatizing. Schneidert et al. (2003) point out
that an individual’s impairments can result in activity
limitations as a result of barriers in the environment.
An individual with AD with the typical concomitant
language and communication difficulties can experi-
ence activity limitations in social interactions because
of negative social attitudes and stigma towards those
with AD.
The following items comprise environmental
factors in the ICF: products and technology (e.g.,
products and technology for communication), nat-
ural environment and human-made changes to
environment (e.g., sound intensity), support and
relationships (e.g., immediate family), attitudes (e.g.,
societal attitudes) and services, systems and policies
(e.g., social security services, systems and policies).
Each item can serve as a facilitator or a barrier.
Recent research highlights the importance of envir-
onmental considerations relative to communication
and dementia (Lubinski, 1995; Ryan, Meredith,
MacLean & Orange, 1995). Lubinski (1995) dis-
cussed the concept of a communication-impaired
environment, that is, ‘‘one where there are few
opportunities for successful, meaningful communi-
cation’’ (p. 261). She noted that clinicians and
caregivers, both institutional and family, must work
to reduce the negative effects of the communication-
impaired environment to ensure optimal commu-
nication for older adults. The Communication
Enhancement Model (put forth as a solution to the
communication predicament of aging – see Ryan
et al., 1995) recognizes the importance of multiple
environments when communicating with older
adults who do and do not have dementia. Family
members in Orange’s (1995) study were asked to
describe environments, both psychosocial and phy-
sical, that facilitated or interfered with communi-
cation for their relative with AD. Family members
reported that difficulties arose in terms of talking and
understanding in large groups, speaking and listen-
ing to strangers and communicating under pressure.
Facilitative conditions included small groups of
familiar, patient individuals, one-on-one conversa-
tions, interactions in familiar environments and with
no pressure to participate in conversations.
Products and technology
In a series of publications, Bourgeois and colleagues
demonstrated that external memory aids such as
memory wallets and conversation notebooks
(Bourgeois, 1992; Bourgeois et al., 1997; Bourgeois,
Schulz, Burgio, & Beach, 2002) have a positive
influence on the communication of individuals with
AD. Bourgeois and Mason (1996) demonstrated that
when using a picture booklet that contained personal
information, individuals with AD produce more
meaningful utterances.
Bourgeois et al. (1997) investigated the benefits of
training family caregivers to use a cuing system to
reduce repetitive verbalizations made by their family
members with AD. Caregivers were instructed to
direct their relative’s attention to a memory notebook
or to have their relative read responses from prepared
memo-boards or index cards when they repeated
words or phrases. They reported a reduction in the
number of times the individuals with AD repeated
the same statement or question. These studies
highlight the potential to increase meaningful con-
versation through the provision of external memory
aids.
Interpersonal support and relationships
Family and health professionals are in positions to
support as well as to undermine opportunities for
communication by individuals with AD. The inter-
personal support and relationships elements relate to
the ‘amount’ of support or hindrance that is or can
be provided. Family members and health care
professionals who are unable to communicate with
individuals with AD because they do not know the
best strategies to communicate may be creating
unnecessary barriers that, in turn, contribute to their
social isolation. Alternatively, health care profes-
sionals who are educated and trained in the area of
communication, language and dementia are better
equipped to provide opportunities for communica-
tion for those with AD and also are in a position to
assist family caregivers to communicate more effec-
tively and in more rewarding ways with their
relatives. Speech-language pathologists (SLPs) and
other communication clinicians are best positioned
to educate and to train health care professionals
and family caregivers about communication and
194 K. Byrne & J. B. Orange

dementia and to offer the latest evidence-based
information on strategies to compensate for language
and communication impairments. This focused role
of SLPs in communication education and training
can provide supportive communication environ-
ments for individuals with AD.
It is crucial to emphasize that despite their
language and communication impairments, indivi-
duals with dementia often are able to engage in
meaningful conversations with proper support and
informed conversational partners (Sabat, 1991;
Tappen, Williams-Burgess, Edelstein, Touhy &
Fishman, 1997). Programs designed to train health
care professionals and family caregivers to commu-
nicate more effectively with individuals with AD have
been implemented, tested and shown to be success-
ful in improving the communication abilities of
health care professionals and family members
(Ripich & Wykle, 1996; Santo-Pietro & Ostuni,
2003). It is essential for the well-being of indi-
viduals with AD and their family caregivers that
there be an increased focus on educating conversa-
tional partners about the retained and trainable
abilities of individuals with AD and a movement to
create opportunities for conversation in therapy
programs (Hopper, 2003; Orange et al., 1995).
Bourgeois (1998) highlighted the importance of the
recommendation made by the American Speech-
Language and Hearing Association’s that speech-
language pathologists need to provide assistance to
families to facilitate understanding of communica-
tion in individuals with dementia.
Attitude
Stigma towards individuals with dementia can result
from the perception that they experience a loss of
self. Despite their obvious cognitive, language and
communication impairments, researchers argue that
individuals with dementia retain a sense of self and
that it is the way they are treated in society that
results in the loss of a public self (Sabat & Harre´,
1992). Kitwood (1997) contends that personhood
remains in individuals with dementia and the process
of optimal caring must acknowledge the person.
Kitwood (1997) encourages a societal shift in
thinking about individuals with dementia as persons,
rather than as a disease process. Ryan, Byrne,
Spykerman and Orange (2005) reviewed a series of
communication strategies that promoted personhood
in individuals with dementia. A supportive environ-
ment, in this case communication strategies that
supported personhood, resulted in meaningful con-
versation between experienced communicators and
an individual with AD.
In a national survey of speech-language patholo-
gists in Canada, almost all respondents identified the
treatment of dementia as within their scope of
practice (Cleary, Donnelly, Elgan & Hopper,
2003). However, only 56% agreed that individuals
with AD could benefit from speech-language pathol-
ogy interventions. Nearly 75% reported that
individuals with AD who could benefit from
speech-language pathology are not referred to them.
Notably, over 95.5% of the SLPs strongly agreed or
agreed that personal caregivers of individuals with
AD or other dementing illnesses can be trained to
facilitate more effective communication in indivi-
duals with AD.
Services, systems and policies
Cleary et al. (2003) noted that only 2% of SLPs in
Canada work in long-term care facilities, settings in
which many individuals with AD live. The investi-
gators concluded that education and public
awareness are critical steps to improve SLP services
for individuals with dementia. They also noted that
attitudes toward the communication of individuals
with AD are problematic from systems and service
perspectives. Other health care providers often do
not refer AD individuals to speech and language
services (Cleary et al., 2003) and even within the
profession there is widespread belief that individuals
with AD cannot benefit from SLP services.
Brown and Orange (in press) studied the curricula
of Canadian university programmes and clinical
practice patterns in geriatric speech-language pathol-
ogy in Canada. They found considerable variation in
the amount and manner of instruction in academic
and clinical education curricula dedicated to ger-
iatric SLP. Their findings are similar to those found
in surveys of university SLP programs in the USA
(e.g., Raiford & Shadden, 1985). The 495 clinicians
who participated in the survey were critical of their
education and training in geriatric SLP, and
reported dissatisfaction with their current knowledge
on topics related to geriatric speech-language
pathology (SLP). Interestingly, current academic
and clinical requirements for new SLP graduates in
Canada, as established by the Canadian Association
of Speech-Language Pathologists and Audiologists
(CASLPA) do not specify any required geriatric
education and clinical practicum. In the interest of
advancing the development of geriatric SLP in
university curricula and improving the clinical
practice patterns of clinicians, students should be
required to log the hours dedicated to serving older
adults, just as is done for preschoolers and school-
age children.
Personal factors
Personal factors are included in the ICF conceptual
framework because of their considerable influence on
health and because of their potential impact on the
development of interventions. Several personal fac-
tors have been studied in relation to language
performance and individuals with AD including
gender, race and age of onset. There are conflicting
Communication enhancement in dementia for family caregivers 195

findings regarding differences in language perfor-
mances between men and women with AD. Several
studies report that women perform more poorly than
men on a range of language tasks including naming
(Henderson & Buckwalter, 1994; Ripich, Petrill,
Whitehouse & Ziol, 1995) word recognition (Ripich
et al., 1995) and verbal fluency (Henderson &
Buckwalter, 1994). More recently, others reported
no significant cross-sectional (Bayles, Azuma, Cruz,
Tomoeda, Wood & Montgomery, 1999) or long-
itudinal differences (Bayles et al., 1999; Hebert,
Wilson, Gilley, Beckett, Scherr & Bennett, 2000)
between men and women with AD on tests of
language comprehension and production. Ripich,
Carpenter and Ziol (2000) reported that conversa-
tional discourse differences are minimal between
men and women with AD but differences emerge
relative to the use of cohesion devices. Differences in
disease severity ratings and study design (long-
itudinal vs cross-sectional) are offered as
explanations for conflicting findings (Bayles et al.,
1999; Hebert et al., 2000).
Studies of the language impairment in AD that
consider age of onset also show conflicting results.
Bayles (1991) reported that after controlling for
disease severity, a later age of onset of AD is related
to decreased scores on measures of confrontation
naming and auditory and reading comprehension
while others report that individuals with early onset
dementia experience greater language impairment
(Koss, Edland, Fillenbaum, Mohs, Clark, Galasko
et al., 1996; Lawlor, Ryan, Schmeidler, Mohs &
Davis, 1994).
Replication studies and further examination of
other personal factors on language and communica-
tion performance such as bilingualism and
polyglotism, levels of education, general health status
and hearing levels are needed. For instance, mobi-
lity restrictions coupled with a communication
impairment, other co-morbidities and a hearing
impairment can further complicate attempts to
communicate and can result in limited opportunities
for participation and, in turn, conversational oppor-
tunities.
Evaluation of the ICF for use in the
development of language and communication
enhancement programs for family caregivers
Strengths
Several authors emphasize the importance of adopt-
ing a biopsychosocial approach to understand
functioning and disability in health (Bickenbach
et al., 1999; Imrie, 2004; Kearney & Pryor, 2004).
Movement away from a medical model of health
toward the biopsychosocial approach is considered a
positive step by many current health researchers in
terms of expanding our understanding of the
experience of disability (Dahl, 2002; Eadie, 2003;
Kearney & Pryor, 2004). Simultaneously, in light of
findings that language and communication difficul-
ties in AD are reported to be highly problematic by
family caregivers and that family caregivers can be
trained successfully to incorporate strategies when
communicating with their relatives (e.g., Orange &
Colton-Hudson, 1998), researchers are developing a
solid base of evidence supporting the need for
language and communication education and training
for family caregivers. The ICF is a comprehensive
framework that incorporates synergistic interactions
among the multiple facets of functioning and
disability which, in turn, facilitate systematic appr-
oaches to help develop language and communica-
tion enhancement programs for family caregivers.
Moreover, the ICF provides a standardized and
common language for researchers and clinicians
internationally to use in the development of such
programs.
The FOCUSED language and communication
training program for caregivers of individuals with
dementia, developed by Ripich and Wykle (1996),
incorporates several components addressed by the
ICF such as environmental considerations and body
structures and functions. However, the FOCUSED
program is not based on a theoretical framework
that justifies its program elements. A unified theory
with universal language that includes the range
of language and communication changes in AD
increases the validity of intervention programs.
Other perspectives of the language and commu-
nication in AD, such as functional communication,
neurolinguistics, psycholinguistics and sociolinguis-
tics, provide valuable detailed views. Each of these
perspectives on its own, however, does not provide
a comprehensive representation of the sweeping
impact of the language and communication
changes on individuals with AD and their care-
givers. For example, a functional communication
approach enables researchers and clinicians to
consider everyday communication activities but
does not offer considerations or explanations of
the body structures and functions that underlie
changes in functional communication. Similarly,
language and communication enhancement pro-
grams based on an environmental approach include
important modifications to the physical and social
environments in which individuals with AD com-
municate but do not provide explanations of the
neurolinguistic changes that underscore the need
for the environmental modifications and supports.
A neurolinguistic model describing the language
changes in AD does not incorporate the resulting
limitations to activities and participation, nor does
it provide consideration of the environmental
factors that can support or interfere with language
and communication. This model does offer, how-
ever, detailed perspectives of the links between
central nervous system structures and linguistics
systems and processes.
196 K. Byrne & J. B. Orange

Arthanat et al. (2004) note that the ICF is a useful
framework to explain cognitive impairments because
it emphasizes how cognitive functioning affects
everyday activities and function and provides oppor-
tunities to understand how environmental aspects
can facilitate or hinder cognitive function. Likewise,
an advantage of using the ICF framework for
developing language and communication enhance-
ment programs for family caregivers of individuals
with AD is that it provides researchers and clinicians
with opportunities to examine how language and
communication functioning impact on the day-to-
day activities of individuals with AD while consider-
ing potentially modifiable environmental facilitators
and barriers to communication. The use of the ICF
to understand language and communication impair-
ments in AD highlights the need for further research
into the everyday activities of individuals with AD
and how these are impacted by language and
communication impairments. In addition, the ICF
framework encourages an individualized approach.
Language and communication changes at the level of
body structures and functions are heterogeneous in
individuals with AD and similarly, the experience of
these impairments may vary considerably depending
on a variety of factors that may be unique to
particular individuals (e.g., support available).
Perhaps one of the most critical aspects of the ICF
relative to AD is that it recognizes that family
caregivers are important potential supports and
barriers to communication. The ICF compels
researchers and clinicians to consider family care-
givers within the broad context of communication.
The fact that family caregivers are included within
the environmental factor of the ICF coupled with the
idea that language and communication problems in
AD are burdensome to caregivers provides a solid
rationale for the development, implementation and
testing of family caregiver communication enhance-
ment education and training programs.
It is important to note that interpersonal support
within the environmental factor considers the amount
of support family caregivers do and do not provide.
Thus, family caregivers are considered to the extent
that they support or hinder individuals with AD. In
the ICF manual, the WHO authors identify possible
areas for future development and application of the
framework including studying the disability and
functioning of family members that can result from
the health condition of their relatives. This is termed
third-party disability. The potential impact of the
language and communication impairments experi-
enced by individuals with AD on their family
caregivers, in terms of limitations to activity and
participation, would be included in studies of third-
party disability. Evidence from research that exam-
ines the disability and functioning of third-parties
(e.g., family members) will strengthen the case for
the implementation of language and communication
enhancement programs for family caregivers of
individuals with AD. There is an early emerging
literature that shows increasing levels of caregiver
stress and burden that are linked with the language
and communication problems in AD (Murray et al.,
1999; Savundranagam et al., 2005). Moreover, in
their research on spouses’ perspectives of older
adults with hearing impairment, Donaldson, Worrall
and Hickson (2004) suggest using the ICF as a
framework to study third-party disability. They are
currently using the ICF framework to examine how
significant others experience activity limitations and
participation restrictions as a result of their spouse’s
hearing impairment.
An additional major strength of using the ICF
framework to develop language and communication
enhancement programs is that it requires researchers
and clinicians to consider retained abilities. The ICF
forces researchers, clinicians and caregivers to
examine what individuals with language and com-
munication impairments can still do despite
impairments. Current standardized language and
communication tests and assessment approaches of
AD provide, primarily, a deficit perspective of skills.
Individuals with AD retain several cognitive and
communication abilities throughout the course of the
disease (Hopper, Bayles & Kim, 2001; Sabat &
Collins, 1999; Santo-Pietro & Ostuni, 2003). For
instance, individuals in the late stage of AD retain
portions of their autobiographical and procedural
memories, the ability to read aloud and a desire for
interpersonal communication and engagement in
social rituals (Santo-Pietro & Ostuni, 2003). Hopper
et al. (2001) provide an excellent review of the
cognitive-linguistic abilities that remain intact at
various stages of AD pointing out that moderate
stage AD individuals reminisce about the past,
express needs and make meaningful statements in
conversation. Tappen et al. (1997) showed that with
proper support, meaningful conversation is possible
with individuals with dementia. It is critical that
researchers and clinicians consider the retained
abilities of individuals with AD to ensure that
language and communication education and training
programs do not focus solely on what individuals
with AD cannot do but rather ensure that programs
include what individuals with AD are able to
accomplish.
SLPs can use the ICF framework in the future to
develop a comprehensive curriculum for family
caregivers based on the individual components of
the ICF. In this regard, programs would cultivate a
climate of supportive communication. The curricu-
lum would address both the retained abilities and the
declining language and communication skills of
individuals with AD. For example, program ele-
ments, based on the ICF components, might include
choosing supportive environments in which to
communicate, selecting personally relevant topics
for discussion based on episodic memory strengths
and engaging in verbal activities that minimize
Communication enhancement in dementia for family caregivers 197

anomia and optimize word retrieval. The program
also must focus on communication activities that are
functional, relevant and meaningful to individuals
with AD and to their family caregivers.
Limitations
The ICF is not well-known by speech-language
pathologists and is not generally incorporated
into their clinical practice. McCooey-O’Halloran,
Worrall and Hickson (2004) note that SLPs do not
routinely consider the ICF in acute care hospital
settings. There is a growing literature, however,
describing the use and benefits of the ICF for
individuals with language and communication dis-
orders that contributes to a universal language and
understanding among SLPs, and a comprehensive
approach to the training of family caregivers of
individuals with AD. Another limitation of the ICF,
as described by Boles (2004), is the lack of
‘‘standardization’’, for example, of environments.
Boles points out that researchers and clinicians are
hard-pressed to establish the prototypical contexts
within which to examine health, particularly in light
of how individuals live and travel extensively within
the ‘‘global village’’.
A final limitation of the ICF is that it does not
incorporate a subjective view of disability and
functioning. Threats and Worrall (2004b) argue that
the ICF focuses exclusively on the person with the
health condition and that assessments of functioning
and disability based on the ICF framework are meant
to include the perspectives of the individual with the
impairment. However, others note that the ICF
framework does not provide for an explicit con-
sideration of the subjective dimension of functioning
and disability (Ueda & Okawa, 2003). That is, how
does the individual feel about his or her disability?
The viewpoints of individuals with dementia relative
to their condition have begun to be studied in recent
years (e.g., Fukushima, Nagahata, Ishibashi,
Takahashi, & Moriyama, 2005; James, Xie, &
Karlawish, 2005). Further, there are several books
written by individuals with AD describing their
experiences (e.g., McGowan, 1993; Truscott,
2003). There also is an extensive literature of family
caregivers’ perspectives of caring for their relatives
with AD (e.g., Parsons, 1997). What remains
unknown, however, is how the ICF can contribute
to an understanding of the experience of those with
disability and how the framework can be expanded to
represent more accurately the subjective experience
of disability. Further work on these perspectives is
warranted.
Conclusions
In a review of interventions designed for caregivers
of individuals with AD, Bourgeois, Schulz and
Burgio (1996) emphasize that for many caregiver
interventions a theoretical basis is presented as more
of an afterthought than ‘‘a strong driving force
behind a particular approach’’ (p. 39). The ICF
framework can support the development of language
and communication enhancement interventions for
family caregivers of individuals with AD that
emphasize a comprehensive approach to the under-
standing of functioning and disability. Many
communication-based researchers already acknowl-
edge the potential of the ICF framework as a basis for
communication assessments and interventions (e.g.,
Threats & Worrall, 2004a & b). We believe the ICF
is an ideal framework for the development and
implementation of comprehensive communication
education and training programs for family care-
givers of individuals with AD. We also recognize,
however, the challenge of convincing those in
decision making positions to adopt the ICF frame-
work within health care policies and best practice
guidelines.
The heterogeneity of the language and commu-
nication changes experienced by those with AD
necessitates a framework that considers a variety
of influential factors. Communication functioning
and disability of individuals with AD and assoc-
iated contextual factors are captured compre-
hensively in the ICF by the requisite exploration of
communication impairments as well as the retained
communication abilities. The ICF provides a uni-
versal language, allows for the inclusion of the family
caregiver as a potential support or barrier, and
considers the everyday activities and participation
in society. The ICF framework also encourages
interdisciplinary approaches to intervention because
co-existing health conditions are considered in terms
of how they impact language and communication
impairments. Future development of the ICF will
require more explicit considerations of the subjective
experience of disability. Moreover, speech-language
pathology researchers and clinicians will need to
continue building the foundation of research that
exists about the ICF and language and communica-
tion disorders, especially in AD. Empirical testing of
language and communication interventions based on
the ICF will be necessary to determine the validity of
the framework for use in the development of
communication enhancement programs for family
caregivers of individuals with AD.
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