Original Paper

Folia Phoniatr Logop 2017;69:131–141 Published online: January 18, 2018

DOI: 10.1159/000479927

Speech and Communication Changes

Reported by People with Parkinson’s
Disease
Ellika Schalling a, b Kerstin Johansson a, b Lena Hartelius c
     

a Division
of Speech and Language Pathology, Department of Clinical Science, Intervention and Technology,
Karolinska Institutet, Stockholm, Sweden; b Functional Area Speech and Language Pathology, Karolinska University
 

Hospital, Stockholm, Sweden; c Institute of Neuroscience and Physiology, Department of Health and Rehabilitation,
 

Speech and Language Pathology Unit, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden

Keywords rassment sometimes or more often to more than half. Forty-

Speech · Voice · Swallowing · Communication skills ·
Dysarthria · Parkinson’s disease · Speech-language
pathology · Quality of life · Service provision
Abstract
Background: Changes in communicative functions are com-
mon in Parkinson’s disease (PD), but there are only limited
data provided by individuals with PD on how these changes
are perceived, what their consequences are, and what type
of intervention is provided. Aim: To present self-reported in-
formation about speech and communication, the impact on
communicative participation, and the amount and type of
speech-language pathology services received by people
with PD. Methods: Respondents with PD recruited via the
Swedish Parkinson’s Disease Society filled out a question-
naire accessed via a Web link or provided in a paper version.
Results: Of 188 respondents, 92.5% reported at least one
symptom related to communication; the most common
symptoms were weak voice, word-finding difficulties, impre-
cise articulation, and getting off topic in conversation. The
speech and communication problems resulted in restricted
communicative participation for between a quarter and a
third of the respondents, and their speech caused embar-
five percent of the respondents had received speech-lan-
guage pathology services. Conclusions: Most respondents
reported both speech and language symptoms, and many
experienced restricted communicative participation. Access
to speech-language pathology services is still inadequate.
Services should also address cognitive/linguistic aspects to
meet the needs of people with PD. © 2018 S. Karger AG, Basel
Introduction
Parkinson’s disease (PD) is one of the most common
neurodegenerative disorders, with a prevalence varying
between 108 and 257 per 100,000 in the general popula-
tion. The prevalence increases with age to 3% over the age
of 80 years [1]. The prevalence of speech and voice symp-
toms among people with PD is relatively high. In a study
by Ho et al. [2], 73.5% of the participants with PD had
mild or more severe speech symptoms when assessed by
two trained professionals. In another study, 76% of the
people with PD stated that their voice was not as good as
it used to be, and 56.5% reported that their speech was
slurred [3]. In a Swedish survey from the 1990s, 70% of
133.6.82.173 - 1/19/2018 3:02:31 PM

© 2018 S. Karger AG, Basel Ellika Schalling

Division of Speech and Language Pathology
Department of Clinical Science, Intervention and Technology, Karolinska Institutet
E-Mail karger@karger.com
SE–141 86 Stockholm (Sweden)
Nagoya University

www.karger.com/fpl
Downloaded by:

E-Mail ellika.schalling @ ki.se

the respondents reported that they experienced speech
and voice changes as a result of PD. Weak voice was by
far the most commonly reported symptom, followed by
imprecise articulation and harsh voice quality. Twenty-
nine percent of respondents perceived speaking to be
their greatest current problem [4]. In a UK study, 10% of
the people with PD perceived speech-voice changes as
their most serious problem when asked about changes
related to PD, and 38% thought speech was among their
top four concerns [3]. Although it has been established
that speech and voice are often affected in people with
PD, there is very limited information about the experi-
ence of living with reduced speech and voice function
from the perspective of the individual with PD, which is
the focus of the present study.
Effects of the Disease on Communication and
Quality of Life
A few studies have presented self-reported informa-
tion on communication impairment in PD. In a study of
104 people with PD and 45 primary carers using a seman-
tic differential technique, a strong perception of a nega-
tive impact of the disease on communication was found
when comparing communication before the disease with
the present situation. This was true regardless of other
related factors, such as disease duration, severity of dis-
ease symptoms, intelligibility, and cognitive status [5].
Qualitative methodology has also been used to illuminate
the influence of communication changes on daily living.
A negative influence of communication changes was re-
ported, even though intelligibility may not have been af-
fected [6]. It is also well established that changes in cogni-
tion and language, such as reduced speed of information
processing, word-finding difficulties, and memory prob-
lems, occur in PD and may have a further negative impact
on communication [5, 7].
A few studies using patient-reported outcomes have
found that changes related to communication also impact
the quality of life in people with PD. Factors found to af-
fect communication, and consequently quality of life, are
impairment of speech function (e.g., vocal loudness) and
also changes in cognition (e.g., reduced verbal fluency
and memory problems) [8]. In a systematic review, Bar-
nish et al. [9] found a positive correlation between great-
er cognitive impairment and more pronounced commu-
nication difficulties in 9 of 10 studies. A significant dete-
rioration of quality of life with increasing disease severity,
including a significant effect of disease stage (p < 0.001)
for the subscore “communication” was found, for exam-
ple, by Schrag et al. [10]. McAuliffe et al. [11] investigated
132 Folia Phoniatr Logop 2017;69:131–141
DOI: 10.1159/000479927
which demographic factors and self-reported variables
are associated with restricted participation in life roles.
They studied the relationship between the Communica-
tive Participation Item Bank (CPIB) and other existing
health-related quality of life measures and demographic
factors. The CPIB is a validated, reliable patient report
instrument available in the English language which as-
sesses the effect of the different acquired conditions on
communicative participation. A disorder-generic short
form has also been developed [12]. Data from 378 par-
ticipants with PD from the USA and New Zealand were
analyzed by McAuliffe et al. [11]. They found that par-
ticipants from New Zealand reported significantly less re-
striction in communicative participation than partici-
pants from the USA, especially younger participants with
PD. A decreased severity of perceived speech problems
was associated with higher communicative participation
scores. This finding is different from that reported in pre-
vious research, where no or only a minimal relationship
was found between objective measures of speech intelli-
gibility or voice intensity and subjective reports of com-
municative effectiveness in people with PD. The authors
speculate that an individual’s own perception of speech
performance may be associated with communicative par-
ticipation rather than with objective measures. In addi-
tion, lower levels of speech usage and higher levels of fa-
tigue, as well as cognitive and emotional problems, were
negatively associated with communicative participation.
Prevalence of Dysphagia among People with PD
Data on the prevalence of communication disorders in
PD may vary depending on, for example, what stage of
the disease and what aspect of communication are being
studied. Dysphagia is also common in PD, and, in the
same way, prevalence data for swallowing disorders vary;
a prevalence of up to 80% has been reported during the
course of the disease [13]. In a meta-analysis, the pooled
prevalence of oropharyngeal dysphagia, based on subjec-
tively reported data on swallowing disorders, was found
to be 35% among people with PD, whereas the prevalence
of swallowing dysfunction, based on objective measures,
was found to be 82% in the same population [14]. Most
likely, not all patients with PD are aware of their swallow-
ing dysfunction and their attention may need to be di-
rected to this area.
Access to Speech-Language Pathology Services
Limited information is available about how many peo-
ple with PD have access to assessment and intervention
by a speech-language pathologist (SLP). In their study
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Nagoya University
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from 1994, Hartelius and Svensson [4] reported that 3%
of the people with PD in Sweden had received speech-
language pathology interventions. In an interview study
from the UK in the mid-1990s, it was found that 15% of
the people with PD had been seen by an SLP. Of the 24
patients with moderately to severely affected speech in
the study, 58% had been referred for speech-language pa-
thology interventions [15]. Since the mid-1990s, both
pharmacological and surgical interventions have im-
proved. Behavioral intervention programs with docu-
mented positive effects on speech and voice function have
also been developed, but information is scarce on how
many people with PD benefit from speech-language pa-
thology intervention, and how it is perceived. Updated
information on the provision of speech-language pathol-
ogy services is lacking.
The Importance of the Insider’s Perspective
Even though there are a number of studies investigat-
ing common speech symptoms and communication
problems in people with PD, only a limited number of
these reports specifically include data from the perspec-
tive of the individual with PD based on self-report. Few
studies focus on the consequences of the symptoms on
communicative participation from the perspective of the
individual with PD. Furthermore, very little information
is available on self-reported strategies used by people with
PD to enhance speech and communication. The insider
perspective is essential in order to obtain meaningful in-
formation about the experience of health conditions, and
also the consequences in terms of participation. Only the
afflicted individual himself/herself can have an informed
opinion about his/her own feelings, needs, and habits
when it comes to speech and communication [16]. Proxy
measures, that is, information obtained by an outside ob-
server, have also been found to be rather unreliable, for
example, regarding ratings of speech usage. Gray et al.
[17] showed that agreements were low to moderate be-
tween Levels of Speech Usage scale ratings made by SLPs
and by the clients themselves. Self-reported information
is therefore most valuable and may help professionals bet-
ter understand what really matters to patients, which is
especially important when prioritizing intervention goals.
Aims and Research Questions
The aim of the present study was to survey the experi-
ences of speech and communication problems in people
with PD in Sweden. An additional aim was to obtain up-
dated information about the speech-language pathology
services received, regarding both their content and the
Self-Reported Communication Changes
in Parkinson’s Disease
amount of contact, as well as with regard to how valuable
people with PD perceived the intervention to be.
More specifically, the study aimed to address the fol-
lowing research questions: what symptoms, related to
speech and communication, are most commonly report-
ed by people with PD, and to what extent do the perceived
speech problems affect communicative participation?
Secondly, what factors negatively influence speech and
communication, and what strategies are used to enhance
communication, as reported by people with PD? The
third and final research question was: how many indi-
viduals with PD had received speech-language pathology
services and what was the content of the intervention?
Materials and Methods
Questionnaire
Data were collected using a self-report questionnaire. The
questionnaire was designed by the three authors specifically for
this study, but some of the questions were inspired by items from
the previous Swedish survey in 1994 by Hartelius and Svensson [4],
to permit comparisons. Similar questionnaires were developed at
the same time by the authors, aimed at collecting information
about the experience of speech and communication and speech-
language pathology services received by persons with multiple
sclerosis (MS), as well as by persons with cervical spinal cord inju-
ries [18].
The questionnaire for people with PD included 26 questions
organized into 3 sections. The first section focused on general
background information, including information about living con-
ditions and occupation, as well as questions about overall health
and the condition. The second section included questions about
how the respondent currently perceived his/her own speech and
voice, factors influencing speech and voice function, and strategies
used for better managing communication. The third section in-
cluded questions about speech-language pathology interventions
and how the services had been perceived. Closed response alterna-
tives were used, but with the possibility to add free text when need-
ed. If appropriate – for example, in response to how often some-
thing occurred – a rating scale was used with the labels “always,”
“often,” “sometimes,” “seldom,” and “never.” The questionnaire
could be accessed either via a Web link or in paper format using
regular mail (in this case, with a reply-paid envelope provided).
Recruitment of Respondents
Respondents were invited to participate in collaboration with
the Swedish Parkinson’s Disease Society, via advertisements in the
society’s journal and website. The Parkinson’s Disease Society is a
national nonprofit organization with the main aim of improving
conditions for individuals with PD or atypical PD and their next
of kin. The organization has approximately 8,500 members, of
whom 5,500 have PD (other members are family or supporting
members, for example, healthcare professionals). The organiza-
tion is represented throughout Sweden via 24 local chapters in all
parts of the country.
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Folia Phoniatr Logop 2017;69:131–141 133
DOI: 10.1159/000479927
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 100
90
80

Number of responses
70
60
50
40
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20
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Fig. 1. Biggest problems caused by Parkin-

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PD symptom
son’s disease (PD; selection of the 3 most
prominent problems from 11 alternatives).

In addition to advertisements in the society’s journal and on
their website, information about the survey and how to participate
was also sent to all local chapters of the Parkinson’s Disease Society
in Sweden for further distribution to their members. Information
about the survey and how to access the questionnaire was also pro-
vided by six SLPs working at two university hospitals in Sweden.
The SLPs distributed written information about the survey and
how to participate via a Web link or in paper format to patients in
the clinic with PD, and the patients could later decide if they
wished to participate without further involvement of their clini-
cians. Questionnaire responses were collected over a 6-month pe-
riod in 2014. The only inclusion criteria stated in the invitation to
participate was that respondents should have been diagnosed with
PD.
Data Analysis
Means and SDs, and other descriptive statistics, were comput-
ed using Excel. Incomplete questionnaires were also included, and
calculations of percentages were based on the number of respons-
es to each particular item.
Ethics Approval
The study was reviewed and approved by the regional ethics
board in Stockholm (project 2012/2212-31/5).
Results
General Information
The survey was completed by 188 people with PD. Of
these, 106 (56%) were male and 82 (44%) were women.
The mean age was 68 years (SD 9), ranging from 36 to 86
years. Disease duration varied from 0 to 25 years, with a
mean of 7 years (SD 5).
Most respondents (68.6%) had passed the age of 65
years, which is the regular retirement age in Sweden. Only
8% were still working. Eighteen percent were on paid sick
leave. Most of the rest of the group combined work and
sick leave, whereas 2 were looking for employment and 1
was a student.
Of all the respondents, 66.5% reported that PD was
their only health problem. The most commonly reported
health problems among the rest of the respondents were
coronary disease (8.5%), followed by hormonal disease
(5.3%), stroke (3.7%), inflammatory disease (2.6%), and
stomach problems (2.1%). Fourteen respondents (7.5%)
had been treated with deep brain stimulation.
The respondents were asked to select a maximum of 3
out of 11 alternatives to describe their biggest problems
caused by the disease. The alternative most frequently se-
lected was “fatigue” (88 responses), followed by “worsen-
ing of speech” (83 responses) and “reduced leg mobility”
(74 responses) (Fig. 1).
Of the 80 respondents with a disease duration of 0–5
years, 59% selected fatigue as one of their biggest prob-
lems caused by PD. Of the 54 respondents with a disease
duration of 6–10 years, 48% made the same selection.
This indicates that fatigue may already be a problem quite
early in the disease process for a relatively high propor-
tion of people with PD. Worsening of speech, the second
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 Weak voice

Word-finding problems

Imprecise articulation

Off topic when speaking

Strained-strangled voice

Slow speech

Harsh voice

Not enough air for speech

Speech symptoms
Become tired when speaking

Difficulties initiating speech

Monotone voice

Iterations

Glottal fry

Rapid speech

Deviating intonation or speech rhythm

High or low pitch

Nasal speech

Other

0 50 100 150
Fig. 2. Frequency of symptoms related to
Number of respondents
speech and communication caused by
Parkinson’s disease.

most common symptom caused by PD, was also found to
be a problem for 44% of the 80 individuals with a disease
duration of 0–5 years, and for 44% of the 54 individuals
with a disease duration of 6–10 years.
Speech, Communication, and Swallowing
The respondents were asked if the disease had affected
their speech in one or more ways. They could indicate
their selections from a list of 20 suggested symptoms. The
list of symptoms was compiled in consensus by the au-
thors, based on their clinical experience working with
people with PD, and by including symptoms commonly
described in the literature. As many as 92.5% of the re-
spondents reported that they experienced at least one
symptom related to speech and communication. The
most commonly reported symptom was weak voice
(71%), followed by word-finding problems (58.6%). In
addition, imprecise articulation was reported by more
than half of the respondents (55.7%), and getting off top-
ic when speaking was reported by 50.1% of the respon-
dents (Fig. 2).
Worsening of swallowing following disease onset was
reported by 40.1% of the respondents, whereas 44.5% did
not experience any changes related to swallowing, and
15.3% were unsure. The most commonly reported diffi-
culty with swallowing was food getting stuck in the throat
(reported by 48% of the respondents who experienced
worsening of swallowing), food or liquids entering the
airways (reported by 41%), or difficulty swallowing pills
(reported by 27%). In addition, 37% reported problems
with dry mouth (xerostomia), whereas 23% experienced
problems with excessive salivation (sialorrhea). Of the 73
individuals who reported worsening of swallowing, 72
also reported at least one symptom related to speech or
voice function. In addition, 48% of the respondents who
reported swallowing problems had been seen by an SLP,
although only 20.5% had received a swallowing assess-
ment.
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 Speak when I am stressed

Speak in a noisy environment

Speak to people in a group

Factors interfering with speech

Variations emotionally

Variations in my health condition

Speak to people I don’t know

Personal characteristics
Always/often
Speak to people I know Sometimes
Seldom
Never
Speak to one or few persons

0 20 40 60 80 100
Fig. 3. Factors negatively influencing Number of responses
speech and communication.

Of those 163 individuals who reported that they expe-
rienced speech problems and responded to the question
concerning embarrassment about speech, 43.5% re-
sponded that speech problems “sometimes” made them
embarrassed. Close to 20% reported that speech problems
“often” made them embarrassed, and 5% responded “al-
ways” to the same statement. The rest, 33%, responded
“seldom” or “never.”
The respondents reported that a range of factors nega-
tively influenced speech and communication to varying
degrees. The aspects that were most frequently rated as
“always” or “often” interfering negatively with speech and
communication were speaking in a noisy environment,
speaking when stressed, variations in emotional status,
and speaking in a group (Fig. 3).
Between 27 and 40% of the participants reported that
speech problems had a negative impact on different areas
of participation (Fig.  4). The area of participation on
which speech problems had the most negative impact was
being able to socialize with others as previously. Almost
40% of the respondents reported that this was the case.
However, of the respondents who concurred with this
statement, 58% responded that they were embarrassed by
their speech problem “sometimes,” “often,” or “always,”
which was lower than for the total group of respondents.
Of those 36% of the respondents who reported that they
could not participate in leisure activities as previously,
53% answered that they were embarrassed by their speech
“sometimes,” “often,” or “always.”
The respondents were asked about making adjust-
ments to reduce their communication problems, and
about the strategies they used to facilitate communica-
tion. Eight alternatives were offered, together with the
possibility to add further alternatives in writing. More
than one alternative could be selected if the respondent
wished. The most commonly selected response was to ad-
just one’s way of speaking, but almost as many (68 indi-
viduals) also reported that they avoided difficult situa-
tions. To postpone talking, or limit the amount of talking,
were other common adjustment strategies (Fig. 5).
Service Provision
The questionnaire also included an item asking if the
respondent ever had been assessed or treated by an SLP
for speech-related problems; to this, 45% of all 188 re-
spondents answered “yes” and 54% “no” (1% did not
know). By far the most common speech-language pathol-
ogy interventions were assessment and treatment of voice
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 Have speech problems resulted in...? Have speech problems resulted in...?

8.2%
17%
■ No ■ No
■ Yes 27.2% ■ Yes
51%
32% ■ Don’t know 64.5% ■ Don’t know

Work-tasks cannot be performed Role in the family has changed?

as previously? (n = 155) (n = 158)

Have speech problems resulted in...? Have speech problems resulted in...?

8.1% 7.4%

■ No ■ No
36.2% 55.6% ■ Yes 39.7% 52.8% ■ Yes
■ Don’t know ■ Don’t know

Cannot participate in leisure Not able to socialize with others

Fig. 4. Impact of speech problems on dif- activities as previously? (n = 160) as previously? (n = 161)
ferent aspects of communicative participa-
tion.

To make it easier to speak and communicate,

I do the following...

Adjust my way of speaking

Avoid difficult situations

Communication strategies

Wait for a better time

Talk as little as possible

Inform others about my speech problems

Use writing instead of talking

Get help from someone

Use aids

Other

0 20 40 60 80
Number of responses
Fig. 5. Strategies reported to facilitate com-
munication.

problems. Forty-two percent reported that they had re-
ceived speech-language pathology treatment. Voice train-
ing was the most common focus of treatment and articu-
latory training the second most common treatment activ-
ity. Few respondents had received an intervention aimed
at enhancing communication or supporting participa-
tion. Seventy-seven percent of the respondents stated that
the speech-language pathology intervention had been
very useful or partly useful, 9% did not find the interven-
tion useful, and 6% were uncertain about the usefulness.
Respondents could also select from a list of statements
explaining why speech-language pathology services had
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in Parkinson’s Disease DOI: 10.1159/000479927
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not been provided. Among the most common statements
was that there had been no need for it (43%), and that
other problems had been prioritized (18%). Other rea-
sons given were that the respondent had not been aware
that there were interventions available to address the
problem (17%), or that the speech problems had not re-
ceived any attention by other health professionals (17%).
Of the individuals who had been assessed by an SLP, 22%
had had a swallowing assessment. Only 7 individuals had
received any further intervention related to swallowing.
Discussion
The aim of this study was to investigate self-perceived
speech and communication problems in people with PD
and how the symptoms relate to other problems caused by
the disease. Factors with a negative influence on speech,
strategies used to enhance speech, and the impact of com-
munication problems on participation in different areas of
life were also surveyed. In addition, access to, the content,
and the perceived value of SLP services were also studied.
As many as 92.5% of the participants reported that
they had at least one symptom related to speech and com-
munication. This is somewhat higher than in previous
studies of the prevalence of speech and voice symptoms
among people with PD. For example, in a study by Miller
et al. [3], 76% of the people with PD reported that they felt
their voice was not as good as it used to be, and 56.5% re-
ported that their speech was slurred. Possibly, self-report-
ed speech and voice problems may be greater than in
some of the previous studies because people with PD who
experience communication problems are more interested
in participating in a survey focusing on these issues. One
may also bear in mind that the respondents were asked if
the disease had affected their speech in one of several ways
(with a range of alternatives to select, or the possibility to
add yet further symptoms). Even if the people with PD
selected one or more examples of how PD had affected
their speech and communication, it is not known to what
degree this was perceived as a problem, which may have
been more the focus of other studies of the prevalence of
speech and voice symptoms.
It is noteworthy that in the ratings of speech and com-
munication symptoms, word-finding problems were rat-
ed as the second most common speech symptom (as many
as 102 of the 188 participants [54.2%] indicated that this
was one of the most prominent symptoms). Traditionally,
hypokinetic dysarthria, with symptoms such as a weak,
harsh voice, imprecise articulation, and dysprosody, has
138 Folia Phoniatr Logop 2017;69:131–141
DOI: 10.1159/000479927
been considered the main cause of communication prob-
lems in people with PD. Symptoms such as problems with,
for example, word-finding and reduced speed of informa-
tion processing may be masked by the motor problems in
PD and therefore overlooked. There has, however, been
an increased awareness of cognitive and linguistic decline
in people with PD in recent years [19]; the impact of re-
duced cognitive functioning on communication has been
investigated in a number of recent studies, as was apparent
in a systematic review by Barnish et al. [9]. In this review,
greater impairment of cognitive status was found to be
related to greater everyday communication difficulties in
9 of 10 studies addressing this question. The observations
in this study that word-finding difficulties and getting off
topic when speaking were among the most common
symptoms, and that there was a relatively large impact on
communicative participation, are in line with these previ-
ous studies. Word-finding problems in people with PD
have also been found to impact conversational interaction
quite substantially. In a study by Saldert et al. [20] it was
shown that 70% of instances of other-initiated repairs
were caused by word-finding problems or atypical word-
ing by the conversation partner with PD. Typically, the
non-impaired conversation partner either rephrased the
utterance or suggested a way to express what the intended
meaning could be in some other collaborative way. One of
the findings of the present study concerned the high prev-
alence of self-reported word-finding problems. Consider-
ing this in the light of its possible impact on conversation-
al interaction supports the suggestion that problems other
than motor speech disorders should be addressed in the
assessment and treatment of communication problems in
people with PD.
Getting off topic in conversation was the fourth most
common symptom self-reported in this study, and this
also suggests that cognitive and linguistic aspects need to
be looked for in people with PD.
Fatigue is recognized as a prominent symptom in sev-
eral different neurologic diseases, for example, MS, myas-
thenia gravis [21, 22], and amyotrophic lateral sclerosis
[23]. In this study, fatigue was the most common symp-
tom selected when participants were asked to indicate the
largest problems caused by the disease from a range of
symptoms related both to motor and sensory functions, as
well as cognition including memory problems, caused by
PD. It should be noted that of those 80 individuals with a
disease duration of less than 5 years, 59% rated fatigue and
44% rated worsening of speech as one of their three biggest
problems. This indicates that these symptoms are present
quite early in the disease process for a relatively large
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group of people with PD. Fatigue in people with PD may
not have received the same focus as it has, for example, in
people with MS. Many clinicians, and also next of kin, who
interact regularly with people with PD are, however, prob-
ably aware that fatigue may be a major concern for many
people with PD, also early in the disease process, as this
study indicates. It is of interest, however, that self-per-
ceived fatigue related to substantial speech activities may
not result in less precise speech quality, as was shown by
Makashay et al. [24] in a study where speech precision and
naturalness of speech was rated by trained listeners, as well
as being studied acoustically before and after speech-relat-
ed exercises. Although speakers with PD, as well as healthy
controls, reported increased self-perceived fatigue, this
was not reflected in speech output in the study. It has been
pointed out in other studies that intelligibility may fluctu-
ate and can be maintained for short periods of time, but it
requires great effort, and sometimes people with PD with-
draw from speaking due to fatigue [7]. It has also been
shown in other studies that fatigue has an impact on com-
munication [25, 26]. It is important to recognize that fa-
tigue affects many aspects of life, including the motivation
to participate in activities (including communication with
others), mood, and physical functions. It is reasonable to
conclude that fatigue plays a role in the willingness to in-
teract with others and may contribute to a reduction in the
quality of life in people with PD. In the present study,
there was a relatively marked impact on communicative
participation for many of the respondents. Based on the
connection between fatigue and restricted communica-
tive participation found, for example, in MS [21], one can
speculate that fatigue may also be one of the contributing
factors resulting in withdrawal from communicative situ-
ations in people with PD.
Many respondents reported that speech problems had
a rather large impact on how comfortable they were as
communicators. Almost half the group in the present
study reported that they sometimes experienced embar-
rassment due to their speech. One in 5 of the respondents
stated that they were “often” embarrassed by their speech.
This may, of course, be a major contribution to limitations
in communicative participation, besides other factors
such as fatigue. The effects on participation in different
activities, or roles in the respondents’ lives, were also quite
noticeable, as between a quarter and a third responded
that speech problems had affected work life, family life,
leisure activities, and their ability to socialize with others.
These observations support previously reported findings
from several interview studies reporting that communica-
tion problems in PD have a direct impact on social inter-
Self-Reported Communication Changes
in Parkinson’s Disease
action with others, and may result in a range of reactions
from apprehension to social withdrawal. Some examples
of the strategies described include taking on a more pas-
sive role as a communicator, and sometimes withdrawing,
or refraining, from communication to conserve energy for
when speaking is really necessary [6, 27]. Self-reported
strategies in the present study were found to be along the
same lines and included “avoiding speech,” “waiting for a
better opportunity,” and “talk as little as possible” (3 out
of the 4 most common strategies). The impact on social
interaction most likely reduces quality of life for many
people with PD; interventions aimed at supporting and
restoring communicative participation should therefore
be a central part of what SLPs have to offer this group of
patients. In the present study, it was found that speech-
language pathology interventions had mainly focused on
remediation of voice and articulation and, to some extent,
on speech rate. Activities addressing restricted communi-
cative participation were not included in the list of what
had been the focus of the speech-language pathology in-
tervention, so it cannot be concluded with certainty that
this was not also targeted in the intervention. In the pres-
ent study, the results related to impacts on communicative
participation do, however, imply that speech-language
pathology interventions need to focus on this area in the
future. Similar findings were reported in a UK study of
provision of speech-language pathology services, where
185 speech therapists, among other topics, reported on the
content of interventions for people with PD [28]. The
authors found that the interventions mainly focused on
voice disorders and reduced intelligibility; there was a gap
between the need for interventions focusing on language
and the actual activities provided.
To address the need to focus on communicative par-
ticipation in future interventions, it may be possible to
include the communication partner(s) in treatment ac-
tivities. It has been shown that there is a range of com-
municative strategies used by communication partners to
successfully support communication, for example, by of-
fering comments or questions to contribute to the flow of
conversation [29]. Training of communication partners
has lately become more established in aphasia rehabilita-
tion [30]. Adaptions of intervention programs, such as
Supporting Partners of People with Aphasia in Relation-
ships and Conversation (SPPARC) [31], to dyads in
which one of the partners has PD were found to be poten-
tially useful as a way to support communication [32]. Fur-
ther studies of interventions, focused on supporting com-
munication in people with PD and their communication
partners, are needed to develop more effective ways to
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DOI: 10.1159/000479927
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enhance communication, regardless of whether the main
problem is due to reduced intelligibility or cognitive-lin-
guistic factors.
Forty percent of the respondents in the present study
reported that they had dysphagia. This is in line with pre-
vious studies of the prevalence of dysphagia in PD [4, 14].
It is also worth noting that almost all respondents who
reported swallowing problems also experienced at least
one symptom related to speech. Almost half of the re-
spondents who reported swallowing problems had been
seen by an SLP, but only 20.5% had received a swallowing
assessment which indicated that this is an area that also
needs more attention by SLPs.
It is interesting to observe that the rate of 45% of the
respondents who stated they had received speech-lan-
guage pathology services is far higher than that provided
in a previous study from Sweden, published in 1994, which
had reported that only 3% had received speech-language
pathology interventions [4]. In 1994, the speech-language
pathology profession had existed for only 30 years in Swe-
den, and access to this service was insufficient. In addition,
historically there was a perception that speech changes in
PD were resistant to speech-language pathology interven-
tion [33]. Since then, the Lee Silverman Voice Treatment
(LSVT LOUD®) has been developed and launched glob-
ally. This intensive treatment program has been studied
extensively, and positive outcomes have been reported
regarding vocal loudness [34] and, in subsequent studies,
other aspects of speech and communication, such as ar-
ticulation [35] and facial expression [36]. The introduc-
tion of LSVT has certainly altered the perception that
speech changes in PD are resistant to speech-language pa-
thology intervention, and may be one factor contributing
to the increase in speech-language pathology service pro-
vision. Furthermore, although speech-language patholo-
gy services are not yet sufficiently expanded in Sweden,
the profession is now 50 years old and better established;
an increase in availability of SLPs may also be a factor con-
tributing to the increase in speech-language pathology
services provided. With 92.5% of the respondents report-
ing at least one speech and communication symptom, and
42% reporting they had received an intervention, there is
probably still a gap to bridge in both informing the public
about how speech-language pathology services may be
beneficial and possibly also in providing the type of service
that people with PD need. Perhaps an increased focus on
supporting people with PD in acquiring useful strategies
for successful communication, and providing strategies
for overcoming limitations in communicative participa-
tion (and an awareness that SLPs can assist to achieve
140 Folia Phoniatr Logop 2017;69:131–141
DOI: 10.1159/000479927
this), could bridge the gap between people with PD who
report speech and communication changes and the nega-
tive consequences caused by this, and the number of indi-
viduals with PD who receive support from SLPs. Other
health professionals may also have an important role to
play in providing information to people with PD about
what speech-language pathology services may have to
offer.
There are several limitations of the present study that
need to be mentioned. First, it is uncertain if the partici-
pants in this survey are a representative sample of people
with PD. There is a relatively wide distribution of age and
of disease duration, and the distribution between men and
women resembles prevalence data for the population with
PD; nevertheless, this does not guarantee that the respon-
dents in this survey are representative of the general PD
population. Respondents were recruited primarily via ad-
vertisements in the journal and website of the Parkinson’s
Disease Society. This may result in a selection of partici-
pants who are more active, and possibly with less severe
disease symptoms, and who are more prone to accept the
invitation to participate, which may have resulted in less
representative data. People with PD with more severe cog-
nitive or linguistic impairment were probably less likely to
participate in this type of survey; information from this
subgroup of people with PD may be underrepresented.
The way the authors formulated the questions may
have influenced the results of the study. In addition, many
of the questions had a list of set response alternatives, and
this could also have influenced the results. Very few re-
spondents added other response options or further com-
ments in writing, even though this was possible. How­
ever, for some of the participants, this could have been
challenging due to motor restrictions.
In summary, the overall aim of this study was to pro-
vide health professionals with updated information on
the perspective from people with PD themselves regard-
ing speech and communication, in order to improve care
for this group of patients. It was found that many people
with PD reported speech and voice problems, even quite
early in the disease process. Cognitive-linguistic symp-
toms were reported almost as frequently and were also
common within the first 5 years after PD onset. A nega-
tive impact on communicative participation was reported
by between a quarter and a third of the respondents, and
we strongly underline that it is important to address this
issue in rehabilitation. Access to speech-language pathol-
ogy services has improved over the last 20 years in Swe-
den, but not all people with PD who report communica-
tion problems have received interventions.
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 Acknowledgements
The authors gratefully acknowledge the financial support from
Aina Börjesson’s Foundation for Speech and Language Pathology
Research. We also wish to thank all respondents who participated
in the survey. Finally, we wish to thank the Swedish Parkinson’s
Disease Society for their collaboration regarding advertising the
survey in order to recruit respondents.
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