“I wanna just not go, because maybe I’m sad”- Views on depression from the perspective of people with aphasia, their care partners, and speech-language pathologists

Abstract

Purpose:

People with stroke aphasia are often excluded from studies of depression because of their language difficulties. Research on individuals without aphasia suggests that different individuals’ experiences with depression can impact their depression management. We conducted a qualitative study to explore experiences with depression as viewed by people with aphasia, their care partners, and speech-language pathologists (SLPs).

Method:

Separate focus groups included people with aphasia (n=15), their care partners (n=13), and SLPs (n=13). Focus groups were conducted using a semi-structured format to elicit information on depression in people with aphasia. Reflexive thematic analysis was used to analyze the data.

Results:

The researchers generated five themes: (1) the reinforcing cycle of depression and aphasia, (2) depression affects the whole person, (3) symptoms fluctuated, and (4) social participation could either protect from or lead to depression depending on the context, and (5) discrepancies on whether people with aphasia shared their feelings related to depression.

Conclusions:

People with aphasia experience depression as an embodied, fluctuating phenomenon that is linked to their communication abilities and social contexts. Results also suggest that depression screening tools should incorporate non-verbal cues and account for symptom variability, while interventions should target the bidirectional relationship between aphasia and depression.

Introduction

Aphasia affects approximately 30% of stroke survivors. Intrinsic to aphasia is the difficulty communicating in different linguistic modalities (i.e., spoken, writing/reading, gestural). People with post-stroke aphasia are at a higher risk of depression than those without aphasia, with prevalence rates reaching up to 60% (Kauhanen et al., 2000). Post-stroke depression is associated with numerous negative quality of life outcomes. It is associated with fewer improvements in activities of daily living when compared with patients without depression, as well as increased mortality rates, longer hospital stays, longer rehabilitation periods, and impairment of personal relationships (Ayerbe et al., 2014; Chemerinski et al., 2001; Lazar & Boehme, 2017; Wang et al., 2017). Furthermore, post-stroke depression is often unrecognized and undertreated due to a lack of clarity about whether somatic symptoms that are present are the result of depression or stroke (Lenzi et al., 2008). Depression, combined with communication impairments in people with aphasia, can lead to increased social isolation, which can further worsen people with aphasia’s depression (Northcott & Hilari, 2011). A few qualitative studies on mood in people with aphasia have found that depression often begins after the onset of aphasia and can persist for many years (Baker et al., 2020; Manning et al., 2022a). People with aphasia are challenged by their communication difficulties alongside psychological distress and a lack of psychological support (Baker et al., 2020). However, the way people with aphasia view the experience of their depression remains limited due to their communication impairments. This is particularly critical given the heterogeneity in depression (Indeed, studies have identified over 1000 different combinations of symptoms in the depression of individuals without aphasia [Fried & Nesse, 2015a, 2015b]). Due to these communication impairments, care partner reports of people with aphasia are commonly used (Laures-Gore et al., 2020). However, inconsistencies are reported with respect to how people with aphasia and care partners view people with aphasia’s mood, which can negatively impact their quality of life (Jewell et al., 2024). Additionally, speech-language pathologists lack mental health support skills, and mental health professionals lack aphasia competency, which results in little overlap in training to address people with aphasia’s mental health concerns, making it difficult for them to access depression treatments (Manning et al., 2022b; Ryan et al., 2019; Strong & Randolph, 2021). Studies regarding patient perspectives on depression in people without aphasia have revealed a complex account of how individuals view the experiences of their own depression (i.e., causes, symptoms, and management) (Chevance et al., 2020; Cornford et al., 2007; Fusar‐Poli et al., 2023; Hogg, 2011; Mancini et al., 2024). Chevance et al. (2020) identified over 100 different outcome domains that were meaningful to patients without aphasia, informal caregivers, and healthcare professionals regarding symptoms and treatment of depression. Fusar-Poli et al. (2023), in their co-written qualitative review with individuals without aphasia who have experience with depression (e.g., those with depression and family members), found that patients with depression had an altered sense of time, loss of identity, a sense of social isolation and loneliness, as well as both emotional and non-emotional experiences (Fusar‐Poli et al., 2023). Ratcliffe (2014) describes that the experience of depression is captured through an existential change in how the person believes they belong in the world, yet the DSM diagnostic criteria fail to capture a range of the kinds of qualitative experiences that may exist beneath a depression diagnosis (Ratcliffe, 2014). Therefore, qualitative research reveals considerable variability in beliefs about depression etiology and impact, with experiences differing across cultural, gender, and racial groups (Chevance et al., 2020; Haroz et al., 2017; Lehti et al., 2009; Postert et al., 2012). For instance, men are less likely to endorse crying and sadness as symptoms of depression compared to women, but anger and higher rates of risk taking may be more prevalent symptoms of depression in men than in women (Martin et al., 2013). Lastly, studies have also found that symptoms such as irritability and anger can be part of depression symptoms even though they are not part of the depression diagnostic symptoms for adults in DSM (Brown et al., 2016; Perlis et al., 2005). For example, Perlis et al. (2005) found that 40% of their patients with major depressive disorder reported irritability, and it was correlated with overall depression severity. Different views on depression causes and symptoms can directly impact how depression is assessed and managed in different individuals. However, people with aphasia are often excluded from studies of post-stroke depression due to their language disturbances and lack of validated depression measures (Ashaie & Cherney, 2021; Mitchell et al., 2017; van Dijk et al., 2016). Thus, understanding the perspectives of people with aphasia and those that advocate for them regarding depression is essential for understanding and ultimately treating people with aphasia’s mental health needs. Collaborating with people with aphasia is a critical course of action for providing them with agency in the healthcare system, allowing them to have a say in the tools available for their recovery (Manning et al., 2019). This approach aligns with the Life Participation Approach to Aphasia and Living With Aphasia: Framework for Outcome Measurement, which emphasizes that assessments and interventions should be guided by real-world needs and consider individuals and their participation goals (Chapey et al., 2000; Kagan et al., 2008). Thus, our study used qualitative methods to explore views of depression in people with aphasia from the perspectives of the individuals themselves, their care partners’, and speech-language pathologists’ views. Qualitative methods can provide an in-depth understanding of how depression is experienced, felt, and communicated by people with aphasia and those who advocate for them. These methods have been used in studies of persons managing depression to better understand their experiences and needs (Chevance et al., 2020; Kornfield et al., 2020).

Materials and Methods

Recruitment and Participants

Participants were recruited from the community via phone calls and e-mails and were part of a larger study aimed at developing a daily life measure of depression for people with aphasia. All participants were presented with an aphasia-friendly consent form, and the first author used supported communication techniques to ensure comprehension of the consent forms. Fifteen people with aphasia, thirteen care partners, and thirteen speech-language pathologists took part in the study. All participants with aphasia had a left-hemisphere stroke and no comorbid neurological conditions impacting their communication. Participants’ aphasia severities ranged from mild to severe on the Aphasia Severity Rating Scale (Simmons-Mackie et al., 2018). Care partners had been caring for people with aphasia for a range of 1–14 years with an average of 5.76 years, and there were several different care partner relationships, including spouses (n=9), parents (n=2), an adult child (n=1) and a sibling (n=1). Speech-language pathologists’ experiences of working with people with aphasia ranged from 2 to 40 years. We used the Center for Epidemiologic Studies Depression Scale (CES-D) to quantify depression and subthreshold depression in our participants with aphasia (Radloff, 1977). The CES-D has shown to be internally consistent and correlated with Stroke Aphasia Depression Questionnaire and PROMIS Mental Health in people with aphasia (Ashaie & Cherney, 2021). Scores ≥ 16 on the CES-D have shown to correspond to major depression while scores between 8 and 15 indicate subthreshold depression (Ashaie et al., 2019). CES-D was administered in an aphasia-friendly manner (e.g., pictorial support). Thirteen out of 15 participants with aphasia met the criteria for depression and subthreshold depression on the CES-D. Two participants with aphasia did not meet any of the depression criteria but they still endorsed some depression symptoms. Table 1 summarizes the participant demographics. Pseudonyms are used for the participants’ actual names throughout the manuscript. This study was approved by the Northwestern University Institutional Review Board (IRB#STU00217329). All participants provided written consent prior to enrollment in the study.

Table 1.

Participant Demographics

Participants*	Age	Gender	Aphasia Severity	TPO	Relationship	Time spent Caring (years)	Time Spent working With PWA (years)	Depression Score
Chris	54	M	2	6				8
Brian	49	M	3	9				22
Gabrielle	58	F	3	3				21
Olivia	31	F	3	5				32
Ben	62	M	2	6				8
Rithika	46	F	2	4				18
Tammy	54	F	1	2				10
Beth	70	F	2	10				17
James	39	M	1	4				12
Harry	58	M	2	1				27
Jason	44	M	2	1				25
Eddie	56	M	2	14				4
Thomas	67	M	2	1				31
Taylor	43	F	3	17				23
David	65	M	2	11				3
Rose	55	F			Spouse	6
Angela	48	F			Spouse	9
Alexander	70	M			Parent	5
Edna	59	F			Spouse	6
Alicia	35	F			Child	3
Johnathan	52	M			Spouse	3
Paul	74	M			Spouse	10
Michelle	59	F			Sister	4
Hunter	43	M			Spouse	1
Ariel	43	F			Spouse	2
Patricia	77	F			Parent	14
Joyce	67	F			Spouse	1
Eliot	60	M			Spouse	11
Rebecca	30	F					7
Zoe	30	F					6
Sara	33	F					10
Jennifer	35	F					11
Frances	28	F					4
Shannon	35	F					11
Mary	30	F					2
Deborah	67	F					43
Sue	55	F					30
Eloise	32	F					9
Lilly	36	F					11
Fiona	41	F					18
Nia	35	F					12

Notes: PWA= Persons with Aphasia, CP = Care Partner, SLP= Speech Language Pathologists, TPO= Time post onset (years), Aphasia Severity was based on Aphasia Severity Rating Scale (Simmons-Mackie et al., 2018). Depression was assessed using Center for Epidemiologic Studies Depression Scale (CES-D) (Radloff, 1977). Scores ≥ 16 on the CES-D correspond to major depression while scores between 8 and 15 indicate subthreshold depression.

^*Each name is a pseudonym to protect the identity of participants.

Procedure

We conducted nine focus groups (three with people with aphasia, three with care partners, and three with speech-language pathologists) virtually over Zoom. Each focus group lasted approximately 2–2.5 hours and included 4–5 participants. We conducted focus groups because research has shown that participants may be more willing to share sensitive information in group settings with their peers due to the reduced interviewer-interviewee power dynamic (Coenen et al., 2012; Guest et al., 2017; Wilkinson, 1998). Two different speech-language pathologists facilitated focus groups for people with aphasia and their care partners. The speech-language pathologist who facilitated the focus groups for people with aphasia primarily worked with this population and was trained in supported communication techniques. The speech-language pathologist who facilitated the care partner groups was a post-doctoral fellow studying how the field of speech-language pathology can improve outcomes for people with aphasia and care partners. The first author facilitated focus groups for the speech-language pathologists and served as the secondary facilitator for all the other focus groups. Supported communication techniques were used to facilitate the focus groups for people with aphasia to ensure their comprehension (Kagan, 1998). These techniques included using simplified language and pictorial and written aids to ensure people with aphasia participated in the focus groups. An interview guide developed with the input from the authors of the manuscript was used to form the general framework of questions related to depression and mental health used in the study. A semi-structured format was used to guide the discussion among participants; facilitators in the groups asked initial questions from the interview guide while also allowing the flow of discussion to other topics participants found relevant and asking follow-up questions regarding details that participants shared. Sample questions from the interview guide are uploaded in Appendix A. The first author re-watched the video recordings of each focus group twice and reviewed the transcripts that had been auto-generated by Zoom, line by line, to ensure transcription accuracy. Each transcript was manually corrected and de-identified in preparation for the qualitative analysis, with any of the corrections color-coded to demarcate where the first author made changes. The first author also took detailed notes during the live focus groups and when watching the recordings to ensure that no relevant details crucial to understanding participant responses were missed.

Analytic Approach

We conducted reflexive thematic analysis (Braun & Clarke, 2006, 2014, 2019), guided by critical realist onto-epistemology, which assumes that individual experiences are impacted by socio-political and cultural-linguistic contexts (Bhaskar & Danermark, 2006; Maxwell, 2012). This approach recognizes that participants’ views are subjective perceptions of real events, influenced by factors that may not be directly observable. Since previous research has indicated that depression symptoms may present differently across different populations (Haroz et al., 2017), we believed this philosophy was best suited to understand the lived experience of depression in people with aphasia, where loss of communication may alter one’s perception of depression (Pilgrim, 2014). The process of reflexive thematic analysis allowed the researchers to inductively develop codes, which were then organized around central concepts for the production of the themes from the data (Braun & Clarke, 2021b). This practice was conducted reflexively, meaning that researchers reflected on how their perspectives contributed to the codes and the themes that were created in the analysis (Braun et al., 2023; Finlay, 2002). Therefore, codes and themes created from the data cannot exist without the researcher who derived them. The speech-language pathologist who facilitated the focus groups with people with aphasia is a white, cisgender middle-aged woman. She is grateful to the people with aphasia and other communication disabilities who have shared their feelings and perspectives with her over years of interactions in clinical and rehabilitation research spaces. She believes that their teaching and the facilitator’s training in bioethics inform her deep belief in epistemic justice and the importance of lived experiential expertise in the development of novel healthcare technologies, particularly those related to individuals’ emotional status and well-being. The first author who transcribed and coded the data is a young, white, able-bodied, cisgender female with a bachelor’s degree in neuroscience. The first author felt that being non-disabled while researching the experiences of people with aphasia limited her understanding of their experiences due to their communication difficulties, which influenced how she developed the themes with the last author and contributed to her analytic memos. The last author is an aphasia researcher whose focus of work is on trying to understand the experience of depression in people with aphasia. His view of depression in aphasia is shaped by his interaction with people with aphasia and his belief in relying on the lived experience to understand what counts as depression to them. Moreover, he believes that even though there may be varying ways people experience depression, some common depression experiences may exist across different populations. The coders would make memos when watching the videos that documented their reflections and later had discussions about how their positionalities and backgrounds impacted their interpretations of the data.

Data analysis

Each transcript was coded by the first author and an undergraduate research assistant using Dedoose (version 9.2). The coding was both semantic (verbatim accounts of what was said, gestured, and drawn) and latent (interpretation by the researchers). Individual codes were included in the transcripts regardless of whether consensus existed between the coders (Braun & Clarke, 2024). If each coder separately produced a code that was considered conceptually the same by both the coders, the code was rephrased as one to prevent an array of codes describing the same concept. This may diverge from typical collaborative coding but is essential for maintaining data organization (Braun & Clarke, 2021a). After each transcript was coded, the first and the last author discussed the codes that were created, and the first author then returned to the earlier transcripts at least once to see whether the new codes applied to the earlier data. After these passes at coding the transcripts, the authors determined that no new codes were emerging and decided to stop further coding attempts. Notably, it is up to the researchers to determine what they think is adequate in terms of how many passes they make at coding the data (Braun & Clarke, 2019). Following the coding, the first and last author met multiple times to organize the codes into different clusters based on similar analytic meanings regardless of which participant group they originated from. We then developed a mind map of initial themes and, after multiple discussions, refined our initial set of themes to develop a final set of five themes. These themes were developed based on patterns we generated across all three groups, recognizing that each group contributed different types of insights in that people with aphasia provided lived-experience perspectives, care partners offered observational accounts, and SLPs provided clinical observations. We did not require identical expressions across all groups but rather focused on conceptual threads that connected all three groups as we understood them. The final set of five themes was discussed with all the authors to ensure we all agreed on their conceptual coherence and that the themes adequately captured our research question. These final themes were then refined again and named to present a coherent picture of how the researchers viewed people with aphasia, their care partners, and speech-language pathologists’ perspectives on the lived experiences of depression in people with aphasia.

Results

We generated five overarching themes that capture each group’s perceptions of the depression experience for people with aphasia: 1) the reinforcing cycle of aphasia and depression; 2) depression affects the whole person; 3) the fluctuating nature of depression symptoms; 4) the role of social participation in people with aphasia’s depression; and 5) differences in whether people with aphasia communicate about their depression. Figure 1 summarizes the themes and subthemes.

Figure 1.

Thematic Map

1). The reinforcing cycle of aphasia and depression

Participants across all focus groups expressed that depression can be greatly impacted by communication ability and vice versa. People with aphasia expressed that communication impairment exacerbated their depression in different situations and was also the cause of their depression in some situations. Care partners also acknowledged that people with aphasia were greatly impacted by their communication challenges, and this would often put the people with aphasia in a state of depression. Speech-language pathologists across the groups also opined that people with aphasia’s language impairments and depression could reinforce each other. It was universally acknowledged that the onset of aphasia was a causal factor in the onset of people with aphasia’s depression. One participant with aphasia described how depression results from changes to her communication:

“talking, communication and reading gone, job gone. And depression is coming. Coming, coming, coming and staying, staying, staying.”- Rithika, participant with aphasia

Rithika expressed that loss of language caused her depression. She explained that language impairments resulting from aphasia meant loss of reading, working, and communicating, things that gave her fulfillment and also described the nature of her depression as long-lasting from these changes to her communication.

Beth, another participant with aphasia who indicated that she had experienced depression, while talking about how loss of language is tied to depression, states:

“Depression is the worst… [feeling]…I can’t describe the pain, and sorrow… I can, um, think loudly, but the words can’t comp- Comprehend.” – Beth, participant with aphasia

Beth describes how knowing what she wants to say but not being able to express it can be such a crushing experience, citing that her words not being understood easily by others causes depressed mood. Her ability to think about what she wants to say and having difficulty with expressing it creates feelings of pain and sorrow.

Another participant with aphasia described how depression is tied to his brain not working because of his difficulties with language. His communication impairments would impact his ability to carry out daily activities, such as cooking, going to the store, or communicating with his wife. The participant states:

“My brain doesn’t work the same way as I want it to. And that that makes me feel depressed.”- Brian, participant with aphasia

The depressed feeling that Brian describes comes from his awareness that he doesn’t have the same functional abilities that he was accustomed to prior to the stroke, indicating that his feelings of depression are a result of the communication challenges he has.

Care partners also articulated that they think communication challenges from aphasia are the cause of depression in people with aphasia. When asked about how to identify depression in family members with aphasia, Alicia, whose mom expressed having felt depressed and had bouts of “deep depression,” stated:

“just when it comes down to… how she … was able to kind of go in and communicate however she needed to… that changed ever since she had her stroke, so I … I know that’s definitely affected for sure, her mood” - Alicia, care partner [adult daughter]

We observed that Alicia also saw that the communication challenges resulting from aphasia had an impact on her mother’s mood. Alicia described this in reference to a question regarding how she identified depression in people with aphasia, and her mother’s communication changes diminishing her independence were a “trigger” for her.

Speech-language pathologists also acknowledged the relationship between people with aphasia’s communication and depression, with one suggesting a bi-directional impact between the two:

“I think they impact one another. So, having the depression probably negatively impacts their ability to communicate, and then having the aphasia might also make their depression worse. So I think that there’s, you know, different factors that are contributing, you know both ways.”- Fiona, speech-language pathologist

This points to a causal feedback loop whereby communication challenges and depression continually contribute to each other. Participants across all speech-language pathologist groups understood that, in people with aphasia experiencing depression, communication challenges had the potential to compound their mental health challenges.

In sum, this theme details how the loss of language resulting in diminished ability to communicate can cause, or at the very least impact depression in people with aphasia, according to people with aphasia, their care partners, and speech-language pathologists. This was unanimously considered important to the onset of depression for people with aphasia.

2). Depression affects the whole person

People with aphasia described experiences of depression as broader than the experience of negative emotions. People with aphasia explained the unique ways depression symptoms could be embodied. Care partners and speech-language pathologists also included their own accounts of embodied symptoms of depression in people with aphasia, which were important for determining whether a person with aphasia was depressed. This theme details some of the ways that participants believed depression could appear for people with aphasia, which was critical for care partners’ and speech-language pathologists’ identification of it.

2.1. Hopelessness

People with aphasia who experienced depression described that lack of interest, having nothing to look forward to, and a general sense of hopelessness were manifestations of their depression. People with aphasia described an absence of positive feelings or interest in their daily lives as a manifestation of feeling depressed. One participant with aphasia who experienced depression stated:

“I feel like when I’m depressed or I, I’m not interested in anything.”- Taylor, participant with aphasia

Brian echoed this sentiment, saying that a way depression manifests for him is in a lack of interest in his typical activities and routines:

“…it means instead of getting up walking the dogs, or something like that, I sit around and watch TV the whole day through. Don’t want to get up…”

– Brian, participant with aphasia

Brian described watching TV “the whole day” as something that he did when not engaging in typical daily activities. Instead of participating in regular activities, he would do nothing but “sit around.” Several participants with aphasia corroborated this experience of lacking desire to engage in any activity during their depression.

Some care partners also understood that a lack of positive stimuli and activities for people with aphasia could cause depressed mood. A care partner of an individual with aphasia who endorsed having depression, while talking about the interaction between aphasia and depression, stated:

““This is one of the things he says regularly. He has nothing to look forward to, because he is so limited on what he can do”- Ariel, care partner [spouse]

Ariel understood that the limitations caused by aphasia would cause her husband to have nothing to be interested in. This could significantly impact his mood and overall attitude, and she knew the feelings of hopelessness and boredom were a major issue for his overall quality of life.

A participant with aphasia who described having depression showed how this sense that there is no activity to do or be excited for could more broadly contribute to a sense that life is not worth living. When participants with aphasia were asked about having nothing to look forward to, Beth states:

“Depressed and um, I think nothing to live for.”- Beth, participant with aphasia

Beth shared that depression caused her to think that there was no positive aspect to life. She showed that a lack of interest in daily activities can progress to a sense that there is nothing in life worth living for, reflecting a sense of hopelessness that contributes to her experience of depression.

Speech-language pathologists also picked up on this sense of hopelessness. Several speech-language pathologists pointed out that people with aphasia distanced themselves from their own decision-making and medical care because of depression; the SLP below described something that she had seen in a person with aphasia who she suspected may have had depression:

“…when people are not engaged in their own decision-making process. Which I think I see a lot by the time a person gets to outpatient rehab is that they’ve just kind of been dragged along. … You’re like, Okay. Well, I was thinking we could do this. What do you think? They’re like [shrug]. You know what I mean? So that’s like almost disassociation with their own care.” – Nia, speech language pathologist

This corroborates the sentiment of having nothing to look forward to as described by people with aphasia as a feature of depression. For an individual with aphasia to feel “dragged along” in their care resulted in loss of interest and agency, which was an important component of depression for people with aphasia. This highlights the “disassociation” the person with aphasia feels with their care as an indicator that there is a greater feeling of resignation. Therefore, hopelessness is a factor of the depression experience for people with aphasia that was critical to identifying depression in people with aphasia.

2.2. Frustration and anger

Frustration and anger were two common symptoms that members of all of the different participant groups explained were a manifestation of depression. One participant with aphasia, who relied on writing to describe how he was feeling, wrote “aggressive” and “mad” when describing other feelings that accompanied his depression.

Similarly, care partners were also attuned to episodes of frustration and anger being symptoms of depression in people with aphasia and could be indicative of more complicated emotions. A care partner whose family member expressed feeling depressed, stated:

“I think it could be the main determining factor of the depression. A lot of times. Frustration.” – Johnathan, care partner [spouse]

Another care partner explained how frustration could be an indicator of depression because of the underlying meaning of the frustration. Hunter, whose partner indicated having depression, states:

“I can kind of see there’s the… trying to express something or say a word. And it’s like, Okay, no, never mind… There’s that frustration, or there’s … the maybe the more extreme frustration. Where it’s ‘why don’t you understand me….the extremes.’” –Hunter, care partner [spouse]

Hunter explains that the type of frustration that is experienced by his partner indicates an extreme mood shift that is markedly different from minor frustrations with communication challenges. He agreed with Johnathan that frustration was a key factor of the depression experience for his partner.

Some SLPs also acknowledged the way that anger and rage were impacting patients with aphasia. When asked about people with aphasia’s experience of depression, one SLP shared:

… thinking about someone who couldn’t get his idea across and wasn’t being treated well in his group home and various things, and he’d just be angry all the time. Angry at the clinician and angry with limited ability to express…” –Deborah, speech-language pathologist

Deborah pointed out that the challenges resulting from aphasia appeared as anger regarding the person with aphasia’s communication ability. She regarded this as important to the experience of depression for some people with aphasia. Anger and frustration were important symptoms of depression that were mentioned by people with aphasia, care partners, and SLPs and could help people with aphasia’s advocates identify depression.

2.3. Changes in sleep and appetite

Several people with aphasia indicated changes to their appetite and sleep patterns because of their depression. These could result in more or less sleep, and changes to appetite that could result in increased or decreased eating. Participants with aphasia across all the groups had varying experiences with sleeping more or less, or eating more or less. One participant with aphasia stated:

“When I’m depressed, I sleep more…but I’m tired all the time anyways …but you know when I’m depressed, I want to just lay in bed.” – Taylor, participant with aphasia

Taylor denotes the difference between “feeling tired all the time,” which may be a result of the stroke, and the change in energy she would feel due to her depression. She describes depression as being so severe that she needs more sleep and to do nothing but lie in bed.

Sleep and appetite changes were also recognized by some speech-language pathologists as clues to people with aphasia’s depression. One speech-language pathologist explained:

“I’ve learned that there’s other signs of depression that aren’t tied to like somebody’s emotional state like changes an appetite, including losing a bunch of [weight], gaining a bunch of weight, changes in sleep patterns.”- Sara, speech language pathologist

2.4. Body freezes, headaches, and facial expressions manifest sadness

Multiple physical sensations were attributed to depression by participants with aphasia. Several participants with aphasia stated their “body freezes” when they feel sad, which causes them to stop moving and lose motivation to do anything (Gabrielle, Brian, Chris). People with aphasia also described “heart palpations” and “headaches” as being symptoms of depression (Gabrielle).

Some care partners and speech-language pathologists talked about how they looked for physical indicators of depression in the absence of language. One care partner stated:

“I’ll just start talking about the day. How was school today? How was, [you] know, what did y’all do today? And then he’ll start talking about the stuff he made …no, I could just tell, like I just know where I can look at his face and tell, his facial expression on his lips are really tight, you know that, um he’s going through some type of emotion at that point.”- Michelle, care partner [sister]

In this case, Michelle is listening to the individual with aphasia, who had described experiencing depression, talk about his day, but she relied on the non-linguistic indicator of his facial expression to get a better sense of his true mood. Michelle could use her family member’s facial expression to make her own determinations about his emotional state, even when verbal communication was challenging.

Care partners understood the mood of people with aphasia as something visible that one “can tell” by just looking at the person with aphasia. One care partner, whose spouse with aphasia experienced depression, shared:

“You can tell the frustration by the reaction. You know. The frustration on her face”- Johnathan, care partner [spouse]

Another care partner, whose spouse with aphasia experienced depression, shared:

“…you can tell when he does not feel good. You can see it in his face, you can see in his eyes…”- Ariel, care partner [spouse]

Most care partners were picking up on ways that the person with aphasia was feeling, even without any verbal communication. It was clear to some that depression was manifesting in observable ways, even with the communication limitations of aphasia.

Speech-language pathologists also clarified that, even though people with aphasia were not able to talk about their feelings, emotional states were revealed through facial expressions. One speech-language pathologist stated:

“I, I think face, facial expression is huge, of course… especially if a person is not able to verbally express how they’re feeling within a specific moment”- Mary, speech language pathologist

In sum, this theme shows that care partners and speech-language pathologists rely on physical manifestations of depression to understand depression experiences of people with aphasia, while people with aphasia who had experienced depression explained that feeling hopeless, frustrated and angry, along with physical symptoms, are common manifestations of their depression.

3). “Things can change quickly”: depression symptoms fluctuate

People with aphasia and their care partners had a wide range of beliefs on the temporal nature of depression symptoms in people with aphasia. Some participants described depression as lasting for months, whereas other participants felt that their symptoms were fleeting and interchanging with positive emotions. One person with aphasia who experienced depression shared how her mood oscillated between happiness and sorrow:

“I get um, blues and um, sorrows um, and then happy. And all sorts of things” – Beth, participant with aphasia

Beth explained that she may be depressed, but her moments of depression are interspersed with moments of happiness. Moreover, the participant also said she “[feels] all sorts of things,” which may indicate a range of daily emotions she may not be able to communicate due to her aphasia.

Care partners provided corroborating accounts by sharing their perspectives on fluctuating depressive symptoms. Paul, Beth’s husband, supported her statement about the frequently changing state of her emotions.

“I don’t know if everyone has seen this, but there’s a lot of fluctuation of emotions. There’ll be a lot of crying, and then there’ll be a lot of laughing”- Paul, care partner [spouse]

The crying and laughing are indicators of the non-linearity of different emotions experienced by people with aphasia. Paul felt that Beth’s depression symptoms included the peppering in of other emotional states that were perplexing to him at times.

Other participants with aphasia also felt their symptoms were fluctuating regularly. Indeed, when discussing the length of their depression symptoms, multiple participants across the aphasia focus groups agreed that emotions associated with depression fluctuated often.

“You were agreeing that you have times when you’re feeling happier times when you feel sadder, and it can go back and forth.” - facilitator

“Both ways.” – James, participant with aphasia

“Yes, I agree. [thumbs up] Yes. Yes.”- Harry, participant with aphasia

These participants with aphasia agreed that their depression is not steady but something constantly changing, that they must deal with this unpredictable nature of depression, and some care partners were also receptive to how frequently depression symptoms could come and go.

Care partners also reported a range of time periods that depression would last. One care partner of a person with aphasia who experienced depression explained that her spouse had very brief periods of low mood, but that he would go back to his default mood shortly after:

“… [He] has, I think, more flare ups. They last…hour, 2 hours, if it’s a particularly bad one, which I haven’t been that many, he just goes to bed and wakes up and attacks the day in a better mood…” – Joyce, care partner

Joyce acknowledged that depressive episodes in people with aphasia can be frequent, but they are not always persistent and can only last a few hours. This oscillating nature of depression symptoms can be seen as challenging because care partners may not know how to deal with the daily variability in the mood of their loved ones.

In sum, this theme suggests that depression is not everlasting in people with aphasia. These depressive symptoms seem to come and go, and sometimes the intensity of the symptoms can be unpredictable.

4). Social participation is a double-edged sword

Social participation was found to have both positive and negative impacts on depression in people with aphasia. When people with aphasia are engaged within the aphasia community, it seems to have a positive impact on their mood. A speech-language pathologist, while describing the positive nature of in-group socialization, stated:

“The difference with how they are when they first come [to the program],…then over time as they get to know people, and they get engaged and they’re part of a group… the persona is so different over time… I’ve had the opportunity to see people over a long period of time and what they look like in the beginning, and then how it changes when they become part of something” – Deborah, speech-language pathologist

Social participation in this context gave people with aphasia a sense of belonging that was important for their mental well-being. However, social participation in unfamiliar settings was found to exacerbate people with aphasia’s depression. One of our participants with aphasia who had depression stated:

“I um, get depressed sometimes because, I can’t, sometimes, when I go to a gathering keep up with, you know, different conversations with people and sometimes I don’t feel comfortable with um, having to repeat myself”- Gabrielle, participant with aphasia

These quotations suggest that when they are in unfamiliar contexts, it is difficult for people with aphasia to keep up with the flow of the conversations, which causes them to feel alienated. This alienation due to not being able to socialize can worsen depressed mood in people with aphasia. On the other hand, when people with aphasia are in familiar social settings, they feel happier. For example, one care partner remarked that her family member with aphasia is comfortable with her sister, but when he is with others who are not close to him, she believes it makes his depression worse:

“other people increases his head pain and increases his depression and frustration”- Ariel, care partner [spouse]

This theme reflects the “double-edged sword” of social participation for people with aphasia, where the benefits of socialization on depression are highly dependent on context. Social participation in familiar contexts can alleviate people with aphasia’s depression symptoms but worsen depression symptoms in unfamiliar contexts.

5). Differences emerged regarding whether people with aphasia communicate about their depression

People with aphasia, their care partners, and speech-language pathologists expressed varying levels of confidence about whether people with aphasia who experienced depression communicated about it in their everyday lives. Some participants felt that depression and mental health in general were hardly ever discussed, whereas others felt more confident that they could speak to the person with aphasia’s mood and mental health. When asked by the facilitator whether they talked to their family and friends about feelings of depression in their day-to-day lives, a participant with aphasia stated:

“Umm, family and friends, um, no, sorry” – Chris, participant with aphasia

Most of the participants in all the focus groups expressed a desire to talk about depression and their feelings in general with others, but they did not. One person with aphasia said: “I ought to, but I don’t” (Brian, participant with aphasia), and another stated: “I try to” (Harry, participant with aphasia).

Therefore, people with aphasia had varying levels of confidence with their abilities and desires to share their feelings of depression with other people. Almost all of the aphasia group members who experienced depression across all focus groups described that they did not address depression with others, either because they did not feel able to (Jason), they felt others were not receptive to their conversations about it (Harry), or they felt that they were expected to maintain an attitude of strength, whereby discussing depression would be interpreted as weakness (Gabrielle).

Care partners, however, were relatively more confident that people with aphasia were open about their depression and emotions in general. A care partner stated:

“He’ll say, frustrating … he’s able to verbalize, um, how he’s feeling…”- Rose, care partner [spouse]

Rose felt that there were words that her husband Chris would use often, such as “frustrated” that were indicators that he needed support and was sharing how he felt. This contrasts with his statement that he did not discuss depression and sad feelings with family and friends. Another care partner, whose husband experienced depression, shared this point of view:

“He’s pretty open, and sometimes he gets frustrated, but we work through it.”- Joyce, care partner [spouse]

Joyce describes her husband as “open,” and that even in moments of frustration, he works through his emotions with her. This implies that Joyce has confidence that after a negative emotional episode, they can resolve it and move on. Most care partners described the conversations about feelings as transparent and part of the relationship with the people with aphasia.

Meanwhile, speech-language pathologists expressed their reservations in identifying depression in people with aphasia, citing a lack of training and resources as why they did not communicate about depression with people with aphasia:

“There’s not…a protocol for it at all.” – Jennifer, speech language pathologist

Jennifer described how there is no established procedure within SLPs’ practice that would allow her to screen for a depressive disorder in people with aphasia. The speech-language pathologists in our study described symptoms that they suspected were related to depression, but explained that this was not based on a standardized depression assessment.

Another speech-language pathologist stated that individuals’ biases and perspectives are a key factor in whether the people with aphasia’s depression is understood:

“It lends to the therapist or the doctor’s um, biases as well as their own emotional intelligence.” – Zoe, speech-language pathologist

Another speech-language pathologist shared that SLPs’ subjectivity led them to suspect that a patient was depressed, but that even with this suspicion, they don’t feel comfortable with identifying depression because it’s not in their scope of practice:

“…it’s just subjective. And even then, I’m not assuming like a formal diagnosis of depression, like again, that’s not in our scope. But I can suspect, based on subjective information…”- Mary, speech-language pathologist

In sum, each of the three groups had varied understandings of whether the depression of people with aphasia is discussed. It appeared that people with aphasia rarely talked about their depression or feelings in general, while care partners felt that people with aphasia were open about their feelings. Speech-language pathologists recognized that depression was present in people with aphasia but felt uncomfortable with identifying or discussing it because they felt it was outside their scope of practice.

Discussion

The present study shed light on the experiences of depression for people with aphasia from their own viewpoint, as well as from their care partners’, and speech-language pathologists’ viewpoints. Participants with aphasia gave vivid descriptions of the causes of their depression, the emotional and physical nature of those symptoms, the fluctuating nature of those symptoms, the duality of social participation, and whether people with aphasia communicate about those symptoms.

The majority of people with aphasia in our study described the onset of aphasia and the resulting communication impairments as a cause of their depression. Our work aligns with previous studies in people with aphasia that found communication difficulty was related to emotional distress (Baker et al., 2020; Thomas & Lincoln, 2008). Care partners in our study also empathized with people with aphasia not being able to communicate and how it was a major contributor to their depression. Speech-language pathologists revealed insufficient training in dealing with mental health problems and noted how mental health professionals lack the training to assess and treat depression in people with aphasia (Strong, 2023). The communication impairments, coupled with depression, can make the rehabilitation process difficult, lower health-related quality of life in people with aphasia, and increase care partner burden (Code & Herrmann, 2003; Hilari et al., 2012; Winkler et al., 2014).

Although the loss of communication in people with aphasia may make it difficult for them to discuss their feelings, depression can manifest in a variety of ways. Indeed, our participants revealed a number of physical manifestations of their depression experiences (e.g., body freezes, headaches, facial cues). These results align with experiences of depression found in studies of people without stroke (Fusar‐Poli et al., 2023; Kapfhammer, 2006). Fusar‐Poli et al. (2023) in their study emphasized the embodied nature of depression (e.g., physical heaviness), which was also visible from our participants’ experiences with depression. Similar to other studies on the lived experience of depression, our participants also indicated a sense of hopelessness and loss of agency related to their depression after the onset of aphasia (Dekker, 2014; Fusar‐Poli et al., 2023; Ratcliffe, 2014). Indeed, hopelessness is an important aspect of the depression experience that is not fully captured by the DSM (Abramson et al., 1989; Gillissie et al., 2023; McKenzie et al., 2010). Furthermore, feeling a lack of interest and engagement (i.e., anhedonia) in day-to-day activities that our participants reported is a core indicator of major depression. Our participants also endorsed frustration and anger as being symptoms of depression. Indeed, studies in people without aphasia have shown that symptoms such as anger, frustration, and irritability can manifest as depression symptoms (Brown et al., 2016; Judd et al., 2013). For example, Judd et al. (2013) found that 54.5% of their participants without stroke had irritability/frustration present with major depressive disorder. Our participants also reported changes in sleep and appetite as depression symptoms, consistent with patterns observed in people without aphasia (Paykel, 1977; Rosenström et al., 2012). These experiences related to depression in our participants suggest that even though people with aphasia may have difficulty talking about their depression, some of their experiences are similar to those without aphasia. Moreover, the indication of physical embodiment of depression in people with aphasia suggests that depression impacts the physical body beyond factors associated with stroke.

The fluctuating nature of depression in people with aphasia aligns with studies of mood in stroke survivors and those without stroke, suggesting that depression is also dynamic in people with aphasia (Ashaie et al., 2023; Cramer et al., 2016; Funkhouser et al., 2021; Manning et al., 2022a; Wichers, 2014). For some people with aphasia, there are intense moments of sadness interspersed with moments of happiness with multitudes of emotions in-between. Similar variability in depression symptoms has also been found in individuals with spinal cord injury, individuals with stroke but no aphasia and those without neurological conditions (Kratz et al., 2017; Neff et al., 2021; Nemesure et al., 2024). The dynamic nature of depression in our participants raises the question of how depression is addressed in people with aphasia and whether existing retrospective measures can capture the within-person variability across different participants. Moreover, this individual variation in the dynamic nature of depression symptoms highlights the need for individualized and tailored depression management strategies for people with aphasia (Broomfield et al., 2011; Hilari et al., 2012; Manning et al., 2022a).

Our study also highlighted how social participation in different contexts impacts depression differently in people with aphasia. Participants in our study described the positive effects on their depression when engaging in familiar and supportive environments where their communication was supported. Speech-language pathologists in our study echoed these points by discussing the importance of aphasia support groups in alleviating depression symptoms in people with aphasia. This is consistent with previous literature showing that people with aphasia had reduced perceptions of social isolation and had greater social connections when participating in aphasia groups (Vickers, 2010). However, when placed in unfamiliar social situations, participants reported feeling further isolated and alienated, which exacerbated their depressive symptoms. Therefore, people with aphasia can feel isolated even while being involved in conversations because they have difficulty following and retaining information (Dalemans et al., 2010). Different aspects of social participation can both help and hinder the mood of people with aphasia while communicating (Le Dorze et al., 2014). These findings are also in line with previous studies in people without aphasia that found that social participation can have both a positive and negative effect on depression symptoms and mental health in general (Holt-Lunstad et al., 2010; Murayama et al., 2015) . For example, Tomioka et al. (2017) found that feeling a sense of obligation to participate in different social events increases mental distress in people without aphasia (Tomioka et al., 2017). Thus, it is important to focus on how one can aid in beneficial social participation of people with aphasia because social isolation as a result of aphasia can contribute to depression (Northcott & Hilari, 2011).

Lastly, discrepancies emerged in how people with aphasia, their care partners, and speech-language pathologists communicate about people with aphasia’s depression. Care partners often believed that they were in tune with people with aphasia’s feelings even though people with aphasia themselves indicated they rarely discussed their feelings. Help-seeking behavior has also varied in other studies of people with aphasia whereby people with aphasia are more likely to seek out professionals rather than friends and family (Kelleher et al., 2024). Our findings are consistent with a previous study from the perspective of speech-language pathologists that found that people with aphasia, due to their communication difficulties, have difficulty talking about their mental health (Kelleher et al., 2024). Speech-language pathologists in our study discussed several deterrents to people with aphasia receiving adequate mental health support, including a lack of overlapping knowledge of aphasia and psychological care: SLPs explained that there is a lack of protocol and direction for referring people with aphasia to mental health professionals. While the American Speech-Language-Hearing Association defines counseling as one of the domains within SLPs’ scope of work, SLPs in our study expressed discomfort in making referrals to mental health professionals and addressing emotional challenges (ASHA, 2016). This discomfort likely stems from a lack of training and confidence rather than actual scope limitations (Hoepner & Townsend, 2024; Sandberg et al., 2021; Sekhon et al., 2019). This was consistent with other findings that stroke health professionals report a lack of knowledge of aphasia and how to support communication and a general lack of psychological support available to treat people with aphasia (Baker et al., 2021). Therefore, the lack of support for people with aphasia stems from training gaps in both mental health professionals and stroke professionals, with few who have the educational preparation to support people with aphasia. Our previous study explored these barriers from SLP perspective in further detail (Boxrud et al., 2025). Lastly, it is possible that self-stigma and perceived stigma associated with depression may have impacted people with aphasia’s willingness to talk about their feelings (Barney et al., 2006). Indeed, studies in people without aphasia have shown that people with depression reported that they would feel embarrassed about seeking mental health help from professionals (Cooper‐Patrick et al., 1997). Therefore, help-seeking related to depression should be normalized in people with aphasia.

Limitations

A limitation of this study is that two of the participants with aphasia did not meet the criteria for depression or subthreshold depression. This may have impacted the results of the study, given that participants may have reported symptoms that they perceived were related to depression, but that may not be considered indicators of depression across various depression assessments (Fried et al., 2016; Kumar et al., 2012). However, we did not want to exclude any participant with aphasia from the study based on whether they had met criteria on a depression screening, because they still had endorsed some depression symptoms. Another limitation was that we did not explore whether people with aphasia’s perceptions of depression symptoms changed from pre- to post-aphasia. These changing perceptions may provide further nuance regarding the specificity of depression experiences post-aphasia.

An additional limitation was the lack of member checking from the study participants. The groups were not asked to review the data to verify if the data had been interpreted as they intended, which could limit the validity of the results (McKim, 2023). However, the purpose of member checking and whether member checking is the optimal standard for validity in qualitative research is still debated (Birt et al., 2016; Candela, 2019).

Clinical Implications

Our study has multiple clinical implications. Figure 2 summarizes how different views and experiences of depression in people with aphasia from their own, their care partners’, and SLPs’ perspectives can aid in identifying their depression symptoms. For example, it is critical to acknowledge that even though people with aphasia may not be able to verbalize their feelings, they can often provide non-verbal cues that may indicate their depression. It is possible that the use of non-verbal cues could be adapted into future depression assessments. Moreover, people with aphasia indicated that their depression symptoms are fluctuating, which aligns with how depression symptoms manifest in individuals without stroke. Therefore, assessments that consider the fluctuating nature of depression symptoms should be used with people with aphasia to fully understand their mood.

Figure 2.

Key Indicators of Recognizing Depression in People with Aphasia

In addition, differences regarding addressing depression for people with aphasia emerged among each of the groups, which is critical for understanding how to assess depression in people with aphasia. Speech-language pathologists would benefit from the implementation of more guidance to screen for depression or refer people with aphasia to mental health professionals, and cross-talk among SLPs and mental health professionals should be expanded to provide the best psychosocial care for people with aphasia (Northcott et al., 2018; Strong & Randolph, 2021). Education initiatives should also address misconceptions related to SLPs’ scope of work when addressing emotional challenges due to aphasia so that SLPs’ have confidence in recognizing and responding to mental health concerns of people with aphasia (Hoepner & Townsend, 2024; Sandberg et al., 2021). This is especially necessary since there are no established protocols on how to best identify and treat depression in people with aphasia. Table 2 provides some possible training strategies for clinicians that can be gleaned from the themes.

Table 2.

Recommendations for Assessment and Treatment

Theme	Explanation	Recommendations
Reinforcing cycle of aphasia and depression	Bi-directional loop between aphasia and depression	Integrate mental health assessments into language assessment sessions to understand the relationship between the two. Refer to mental health professional for serious mental health concerns.
Depression affects the whole Person	Depression can manifest physically (e.g., headaches) and emotionally (e.g., anger)	Clinicians should be aware of holistic symptoms that may not be captured by standard depression screening instruments. Attention should be given to both somatic complaints and emotional cues.
Fluctuating nature of Symptoms	Symptoms can vary over time	Tools that monitor mood should capture symptom variability in the real-world.
Social participation as double-edged Sword	Social participation can hinder or help, depending on the context	Educate family members and clinicians to pay attention to different social environments and promote positive participation (e.g., familiar vs. unfamiliar social contexts).
Differences in communicating about depression	People with aphasia and their care partners vary in how they communicate about depression	Facilitate conversations on mental health between care partners and people with aphasia using supported communication techniques.

Conclusion

Our study explored perceptions of depression in people with aphasia, highlighting how communication impairment results in depression, which manifests in both embodied and non-embodied ways. Moreover, these depression symptoms fluctuated, suggesting a dynamic nature of symptoms that can be altered by factors such as social participation and communication difficulties. In addition, we found discrepancies in whether people with aphasia communicated about their depression to others. Nevertheless, people with aphasia, their care partners, and speech-language pathologists agreed that depression has a significant impact on people with aphasia, and coupled with their loss of language, can result in a sense of hopelessness and loss of agency. We suggest that our findings are best interpreted in Ratcliffe’s (2014) phenomenology of depression, in which depression can be understood as a change in “existential feelings” that are embodied, creating a sense of hopelessness, and altering one’s interpersonal relationships (Ratcliffe, 2014).

Data Availability

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.