Educating and training caregivers of persons with aphasia

Background: Because communication deficits caused by aphasia affect both persons with aphasia and their communication partners, most speech-language pathologists are aware of the importance of client and caregiver education. To maximise the effectiveness of their communicative interactions, training should be conducted for both the aphasic clients and their caregivers. Training conducted in group environments offers peer support through shared learning experiences and joint problem solving.Aims: The purpose of this study was to explore the benefits of a caregiver education and training programme in improving communication between caregivers and their aphasic partners using didactic and experiential approaches in a group setting.Methods & Procedures: Ten caregivers and their aphasic partners, ranging from 4 to130 months post-stroke, participated in a 12-week group training and education programme. Information about stroke and aphasia was provided in a didactic format, and facilitative communication strategies were discussed and practised using Kolb's (1984) experiential learning cycle model. The experiential learning cycle involved drawing on concrete experiences, engaging in reflective observation and abstract conceptualisation, and practising what was learned through active experimentation.Outcomes & Results: Analysis of communicative performance on transactional and interactional tasks demonstrated increased communicative success. Responses on a questionnaire indicated that participants had a better understanding of aphasia and were more confident using facilitating strategies.Conclusions: Group education and training for caregivers and their aphasic partners can be beneficial, even after the couple has been living with aphasia for a number of years. Having an opportunity to practise, observe, and reflect on their performances facilitated participants' learning, and there were observed and reported positive alterations in interactions.     

The evidence for a life-coaching approach to aphasia

Background: A life-coaching and positive psychology approach to aphasia has recently been advocated by Audrey Holland, to whom this issue is dedicated.

Aims: This paper reviews our recent research which informs the three basic assumptions behind a life-coaching approach to aphasia: (1) learning to live successfully with aphasia takes time; (2) aphasia is a family problem; and (3) the goal is to help people with aphasia fit it into their lives.

Methods & Procedures: We assimilate results from three independent qualitative data sets: (1) a project that sought the perspective of 50 people with aphasia, their families, and their treating speech-language pathologist about their goals over time; (2) a project that seeks the views of 25 people with aphasia, their family, and speech-language pathologists about what it means to live successfully with aphasia; and (3) a qualitative structured interview on quality of life with 30 people with aphasia.

Outcomes & Results: The three basic assumptions of the life-coaching approach to aphasia are supported and extended by the data. Participants with aphasia in our studies report how their goals change over time to reflect how they are learning to live with aphasia, but the journey is different for each person. The stories from families elucidate how aphasia is indeed a family concern and requires family involvement. Finally, not only did participants in our studies fit aphasia into their lives, but they also fitted it into a new lifestyle after their stroke.

Conclusions: The assumptions behind the life-coaching approach are well supported by the narratives of people living with aphasia. Even if the life-coaching approach is not adopted wholeheartedly by the profession, the principles of positive psychology and the life goal perspective appear highly relevant to living successfully with aphasia.     

Living successfully with aphasia during the first year post-stroke: A longitudinal qualitative study

Background: Studies exploring the concept of living successfully with aphasia have advanced the understanding of positive adaptive factors, which may inform clinical interventions provided to people with aphasia. Adaptation over time has been identified as a critical component of living successfully with aphasia. Yet, the experiences of individuals with aphasia and factors they perceive to influence living successfully over time remain ill-described. Longitudinal research might add an important perspective to existing literature in the area of living successfully with aphasia and provide clarification regarding the needs of people with aphasia over time.

Aims: To describe the insider’s perspective of what is important to living successfully with aphasia and changes that occur throughout the first year post-stroke.

Methods & Procedures: A qualitative, prospective longitudinal design was used. Fifteen participants took part in semistructured interviews at four time points: 3, 6, 9, and 12 months post-stroke. A total of 50 interviews were conducted. Data analysis sought to identify common features or the shared experiences of the participants.

Outcomes & Results: Findings from this study indicated one overarching theme: actively moving forward. This theme described the importance of participants taking positive actions in order to promote living successfully with aphasia across time. Factors relating to perceived communication improvement, engagement in activities, social support, and maintaining positivity were important in facilitating a more successful life with aphasia across time.

Conclusions: Findings from this study suggest a holistic approach to aphasia management is necessary with direct intervention efforts consistent with the broader context of an individual’s everyday life. Speech language pathologists may play a crucial role in the delivery of timely services to ensure that people with aphasia and their families are supported in their endeavours to live successfully with aphasia.     

The relationship between perceptions of caregiving and carer contributions in an interview situation with a partner with aphasia

Background: Caregiving places an emotional burden on the carer of the person with aphasia as the carer is likely not prepared psychologically, emotionally, or financially for caring for someone post stroke. The carer plays a major role in the recovery process of individuals with aphasia. There is limited research examining the carer’s communicative contributions in an interview situation as it relates to their perceptions of caregiving as well as the relationship to the functional communication skills of the person with aphasia.

Aims: The aim of this study was to examine the carer’s perception of caregiving as it relates to their communication style and interaction with the person with aphasia in an interview situation. The functional communication skills of persons with aphasia were also examined in relationship to the carer’s communicative contributions.

Methods & Procedures: Nine persons with aphasia and their carers participated in this study. Participants were administered a variety of measures including the Communication Activities of Daily Living-2 (CADL-2) to assess functional communication skills, a Spousal Intake Form to obtain participant history and other pertinent information, a Spousal Rating Scale to evaluate the person with aphasia’s current level of performance in certain areas, and The Carers of Older People in Europe index to explore carer’s perceptions of caregiving. Participants were interviewed and discussed their opinion on 6–8 issues (e.g., healthcare system, divorce, technology, poverty). All interviews were transcribed and coded for specific communication behaviours as outlined in a previous study.

Outcomes & Results: The contributions most often used by carers in the interview situations were “speaking for,” revision and correction behaviours. Within this sample, repair of the interviewer’s turn, acknowledging difficulty, rejection, and ambivalent reaction, was not observed. When looking at carers’ perceptions, carers with higher perceived quality of support and used less assistance with word-finding contributions.

Conclusions: There is a relationship between the carer’s communication style and perceptions of caregiving and the functional communication skills of persons with aphasia as evidenced by their raw scores on the CADL-2. In general, our results revealed that carers of persons with aphasia are active contributors in an interview situation when the person with aphasia is attempting to communicate. Also, the carer’s perceptions of caregiving impact the way in which they communicate with the person with aphasia.     

Using communication plans to facilitate interactions with communication-impaired persons residing in long-term care institutions

Background: A large proportion of residents in long-term care institutions present severe and chronic communication disorders that may not respond well to therapy focused on improving language and speech. Moreover, given the ecological relevance of considering communication in situations of interaction, speech-language intervention could aim at facilitating interactions with those residents by informing caregivers about the residents' specific characteristics and communication disorders. Aims: The aims of the present research were (1) to elaborate a Communication Plan that contained information about a resident's specific characteristics and communication disorder, and (2) to evaluate the effects of Communication Plans by considering the point of view of the resident's caregivers. Methods & Procedures: In three long-term care institutions, 10 residents (between the ages of 63 and 95 years) who had severe aphasia or communication impairment, and 39 professional and non-professional caregivers attending to these residents, were recruited. An individual Communication Plan for each resident was constructed employing the results of speech-language and communication evaluations. Before and after these Communication Plans were used, participant caregivers completed a questionnaire designed to measure communication and interactions with residents. Outcomes & Results: A qualitative and quantitative analysis of the results indicated that after using Communication Plans, professional and non-professional caregivers felt more comfortable in communicating with residents, were more knowledgeable about communication characteristics of a given resident, and employed more facilitating strategies in communicating with residents. They perceived Communication Plans as being clear, complete, easy to use, and adapted to their needs with communication-impaired residents. Conclusions: The use of Communication Plans is an appropriate speech-language pathology tool, which may enable caregivers to adjust their manner of communicating to the specific needs of a given person residing in a long-term care unit. It is possible that Communication Plans helped caregivers become more skilled communicators with communication-impaired persons.     

Long-term follow-up in primary progressive aphasia: Clinical course and health care utilisation

Background: Primary progressive aphasia (PPA) is a rare disorder. Data on health care utilisation and care-relevant symptoms are scarce.

Aims: The study aimed at finding out how patients with PPA are cared for, the extent of professional support utilised by family caregivers, and which care-relevant clinical symptoms and signs occur with advanced disease.

Method & Procedures: Forty-three family caregivers of patients with PPA were interviewed with a standardised questionnaire.

Outcomes & Results: A majority of caregivers cared for the patients at home without any support. More than 40% of the patients were treated with cholinesterase inhibitors or memantine. Only 9% of the patients received speech therapy. In advanced PPA, the majority of patients were unable to communicate and almost all needed 24-hr care. Other neurological symptoms appeared, and a considerable number of patients suffered from moderate or severe somatic illnesses.

Conclusion: Future studies are necessary to investigate the reasons why the PPA caregivers hardly utilise informal and formal support, what their specific needs are, and which kind of support and interventions prove to be useful.     

Implicit learning and implicit treatment outcomes in individuals with aphasia

Background: Implicit learning is a process of learning that occurs outside of conscious awareness and may be involved in implicit, exposure-based language training. However, research shows that implicit learning abilities are variable among individuals with aphasia, and it remains unknown whether individuals who show basic implicit learning abilities also benefit from implicit language training.

Aims: The aims of this series of experiments were to test implicit learning in individuals with agrammatic aphasia, examine the effects of a novel implicit language treatment, and investigate whether individuals with aphasia who show implicit learning ability also benefit from implicit treatment focused on passive sentence comprehension.

Methods & Procedures: Nine participants with chronic agrammatic aphasia and 21 neurologically intact participants completed a visuomotor serial reaction time test of implicit learning (Experiment 1). The participants with aphasia also completed a short-term novel implicit sentence comprehension treatment (Experiment 2) that consisted of five sessions of repeated exposure to grammatically correct passive sentences and matching photographs. Sentence comprehension was tested in multiple baseline sessions and on each day of training using a sentence–picture matching task. The relation between participants’ learning patterns across experiments was also examined.

Outcomes & Results: Individuals with agrammatic aphasia as well as neurologically intact adults demonstrated significant implicit sequence learning in the serial reaction time task. However, the participants with aphasia did not show concomitant improvement in sentence comprehension as a result of the implicit treatment protocol.

Conclusions: This study suggests that individuals with agrammatic aphasia demonstrate implicit learning ability; however, this ability does not necessarily promote successful outcomes in treatment that is based solely on implicit training methods.     

The efficacy of an inter-disciplinary community aphasia group for living well with aphasia

Background: Community aphasia groups (CAGs) are argued to have various benefits for people with chronic aphasia. However, there is a paucity of evidence regarding the feasibility of conducting an interdisciplinary programme with content and outcome measures encompassing ICF domains, making it difficult to ascertain the full potential of this service option. As another key population living with aphasia, family members have received little attention in CAG research to date.

Aim: To determine potential efficacy of a speech-language pathologist- and social worker-led CAG model for four people with aphasia (PWA) and their spouses on living well with aphasia within a proof-of-concept trial.

Methods & Procedures: Informed by extensive study of the existing CAG literature, we developed a comprehensive 12-week interdisciplinary CAG model and trial protocol (the InterD-CAG). We used a Phase I pre-post design with a follow-up phase. The group was co-facilitated by a speech-language pathologist and social worker with support from aide staff. The group met at a university clinic for 2 h per week over 12 consecutive weeks. The protocol comprised a combination of communication therapy; conversation practice; social, peer, and psychological support; stroke and aphasia information; and participation in meaningful and accessible activities. Group session time was split into two formats: (1) concurrent sessions dedicated to members with aphasia alone/spouses alone and (2) mixed sessions with both members with aphasia and spouses together. The Therapeutic Factors Inventory was administered at regular intervals during the programme to ascertain participants’ perceptions of group process. Pre, post, and follow-up outcome measures spanned all WHO ICF domains for PWA, with measures for spouses addressing supported conversation skills, psychological health, and carer burden.

Outcomes & Results: Both PWA and spouses perceived the presence of therapeutic factors to be medium or high by Week 12 in the programme. Our hypotheses for significant improvement for PWA in quality of life, aphasia impairment, activity & participation, and contextual factors were partially supported and maintenance of gains was observed in some cases. No clear changes were evident for spouses.

Conclusions: This study contributes preliminary evidence for the efficacy of the InterD-CAG model for people with chronic aphasia. Larger-scale studies with comparison groups are required to build on the present findings with specific attention to spouse support needs.     

A pilot study examining the impact of aphasia camp participation on quality of life for people with aphasia

Objectives: For people with aphasia (PWA), attending an aphasia camp can result in increased confidence, social relationships, and greater participation in activities. Although much anecdotal evidence of the benefits of aphasia camps exists, systematic studies on outcomes from aphasia camp participation are lacking. The purpose of this pilot study was to examine the effect of attending the Alberta Aphasia Camp on quality of life for people with aphasia.

Methods: Nine PWA who attended the inaugural Alberta Aphasia Camp completed the Assessment for Living with Aphasia-2 before and after camp. A subset of their caregivers (n = 4) completed the Communicative Effectiveness Index, a rating scale evaluating their PWA’s communication, and were interviewed about their experiences and perceptions of camp participation.

Results: Significant changes were observed on total scores on the ALA-2, and in particular the Personal and Participation subtests. These improvements were corroborated by themes identified from interviews with caregivers.

Discussion: This study provides preliminary evidence that aphasia camp participation can result in improved outcomes for PWA across a range of domains. Aphasia camps provide a unique intervention for PWA and caregivers to experience therapeutic and recreational activities, respite and create social connections in a supported communication environment. Future studies should recruit a greater number of participants, employ control groups, and examine outcomes for caregivers.     

Reducing safety risk among underserved caregivers with an Alzheimer's home safety program

Objectives: Older adults living with Alzheimer's disease (AD) experience more of the types of accidents and injuries prevalent among older adults. Relatively few studies specifically on safety risks have included older adults of color and tested interventions. This pilot study tested the feasibility and evaluability of educating Hispanic and African American caregivers of patients living with AD about reducing safety risks in their homes.

Methods: This outpatient memory clinic-based intervention study included a pre-/post-test survey design with two nonequivalent groups and predominately serves Hispanic and African Americans. Of 60 eligible caregivers, 67% participated in a tailored, safety training class with an optional follow-up call.

Results: The results indicate a reduction in some safety risks compared to baseline and/or a no intervention group, respectively, including leaving patients at home alone part-time (p < .01 and p < .01), getting lost (p < .05 and p < .05), going outdoors alone less often (p < .05 and p < .01), and giving themselves medicine (p < .05 and p < .01). At post-test, 47 clinically significant instances occurred, in which caregivers who participated in the intervention self-reported patients living with AD to be ‘completely safe’ in one or more of the safety risk items compared to 8 instances among those who did not.

Conclusions: This pilot pre/post design with non-equivalent groups study needs refinement in a future randomized control trial. Despite limitations, this pilot study demonstrates the first feasible and evaluable intervention with both statistically and clinically significant results that suggest potential for reducing safety risks among at-risk minority patients living with AD in future research.     

Divergences of perspective between people with aphasia and their family caregivers

Background: Studies of the relation between family caregivers and care-receivers have identified large divergences between their perspectives. It has been suggested that these divergences may adversely affect the care relationship. However, there has been little research examining the source of these divergences.

Aims: The reported mixed-method study aimed to examine the relationship between people with aphasia and their family caregivers in order to identify the sources of observed divergences of perspective.

Methods & Procedures: A total of 20 people with aphasia and their main family caregivers, living in the UK, completed an adapted version of the Interpersonal Perception Method questionnaire, which yielded both rating data and qualitative data. Participants rated themselves, each other, and how they thought the other would rate them, on issues regarding communication ability and identity.

Outcomes & Results: As expected on the basis of existing research, divergences clustered around the provision of communication support and issues of confidence, independence, embarrassment, and overprotection. A qualitative analysis of the participants' talk during the rating task suggested that a source of these discrepancies is in the conflicting demands which characterise the care relationship, specifically, caregivers' desire to support independence on the one hand but feeling compelled to be protective on the other hand. In response to these demands, caregivers try to create the impression that the disability has less impact than it has, and that they are more in control than they feel they are.

Conclusions: We conclude by suggesting that some divergences of perspective may not be adverse overall, but rather may be a result of caregivers' creative adaptations to seemingly irreconcilable demands.     

The stroke caregiving trajectory in relation to caregiver depressive symptoms,burden, and intervention outcomes

Background: Caregiver depression and burden have a detrimental effect on stroke survivors’ rehabilitation and are contributors to stroke survivors’ hospital readmission and institutionalization. The stroke caregiving trajectory is unique compared to other illnesses, and the effect of length of caregiving on stroke caregiver outcomes is poorly understood. Interventions can improve caregiver outcomes, but the optimal timing of these interventions is unclear.

Objectives: We sought to determine the relationship between: (1) length of caregiving and stroke caregiver depressive symptoms and burden, and (2) length of caregiving and amount of change in depressive symptoms and burden following the Resources and Education for Stroke Caregivers’ Understanding and Empowerment (RESCUE) intervention – an online and telephone problem-solving, education, and support intervention.

Methods: We analyzed retrospective data collected from 72 stroke caregivers who participated in the RESCUE intervention. Outcomes were caregiver depressive symptoms and burden. Data were analyzed using mixed-effects regression analysis.

Results: Baseline depressive symptoms and burden were both negatively related to length of caregiving (p < 0.05). We found significant improvement in caregiver depressive symptoms and burden following an intervention. The interaction between changes in outcomes and length of caregiving was not significant for either depressive symptoms (p = 0.26) or burden (p = 0.10).

Conclusions: This study contributes to the understanding of the relationship between length of caregiving and depression, burden, and intervention outcomes. Clinicians should recognize that the stroke caregiving trajectory can be nonlinear. Routine and repeated clinical assessment of caregiver well-being is needed, along with implementation of interventions when necessary, regardless of how much time has passed since the stroke.     

New word learning in people with aphasia

Background: The theory of speech and language therapy intervention for people with aphasia is still under‐articulated, and some people with aphasia respond better to therapy than others. The reasons for individual variation in response to therapy have not yet been fully established but may partially reflect a person with aphasia's ability to utilise a range of cerebral mechanisms, such as re‐accessing damaged neural pathways and establishing new ones. Most current therapies aim to help the person with aphasia access their previously available language abilities. New learning may offer an alternative therapy approach. However, there is little evidence to date on the effect of aphasia on a person's capability to learn new linguistic information.

Aim: To explore the new vocabulary learning potential of people with aphasia.

Methods & Procedures: Twelve participants, under the age of 65 years and with a range of aphasia severity and personal backgrounds, were taught 20 novel words over four consecutive days. Their learning of this new vocabulary was measured via a range of single‐word processing tasks based on the cognitive neuropsychological model. Ten participants repeated the tasks a few days later to establish whether the new vocabulary had been retained in long‐term memory.

Outcomes & Results: All of the participants demonstrated some ability to learn the new vocabulary (both novel word forms and novel word meanings), with scores ranging from 15% to 99% on the various assessments. At the follow‐up session, the ten participants retained between 49% and 83% of their previous scores.

Conclusions: This study has important implications for aphasia rehabilitation as it has shown that people with aphasia have the potential to learn new linguistic material, even in the presence of severe language impairments. This capacity could be exploited in therapy. Previously known words could be taught as new. Pre‐therapy assessment of the person with aphasia's learning capacity and style would promote individually‐tailored learning experiences and so, potentially, more effective therapy and better clinical outcomes.     

Learning and maintaining new vocabulary in persons with aphasia: Two controlled case studies

Background: Novel word learning of persons with aphasia is little studied, even though a better understanding of learning processes would inform development of effective treatment strategies. Recent evidence suggests some remaining verbal learning capacity in persons with aphasia. Long-term maintenance of newly learned active vocabulary has not been reported previously in persons with aphasia.

Aims: To explore learning and long-term maintenance of novel words in persons with aphasia.

Methods & Procedures: Two English-speaking males with chronic anomic aphasia and two age-matched controls were taught novel names of 20 unfamiliar objects. Half of the words were taught with semantic information (definition) and half without. Participants were instructed to learn the names. The experiment included four training sessions, one post-training test and four follow-up tests administered 1 week, 4 weeks, 8 weeks, and 6 months post-training. We tested explicit learning of the new names through visual confrontation naming. In addition, incidental learning of semantic information was probed over the follow-up period.

Outcomes & Results: The two participants with aphasia learned 6–8 of the 20 novel names during the training. However, this new vocabulary dissipated during the 6-month follow-up. As expected, the controls showed better performance both in acquisition and in maintenance of the new vocabulary over the follow-up period. As regards the accuracy of semantic information, the aphasic participant with semantic impairment demonstrated worse incidental learning of semantic information than controls and the participant with intact lexical semantics.

Conclusions: Some new vocabulary can be acquired even in chronic aphasia but the ability to spontaneously retrieve the newly learned words gradually dissipates over the weeks following learning. Our results also indicate an interaction between the level of lexical-semantic processing skills and incidental learning of new lexical-semantic knowledge in aphasia.     

Speech segmentation in aphasia

Background: Speech segmentation is one of the initial and mandatory phases of language learning. Although some people with aphasia have shown a preserved ability to learn novel words, their speech segmentation abilities have not been explored.

Aims: We examined the ability of individuals with chronic aphasia to segment words from running speech via statistical learning. We also explored the relationships between speech segmentation and aphasia severity, and short-term memory capacity. We further examined the role of lesion location in speech segmentation and short-term memory performance.

Methods & Procedures: The experimental task was first validated with a group of young adults (n = 120). Participants with chronic aphasia (n = 14) were exposed to an artificial language and were evaluated in their ability to segment words using a speech segmentation test. Their performance was contrasted against chance level and compared to that of a group of elderly matched controls (n = 14) using group and case-by-case analyses.

Outcomes & Results: As a group, participants with aphasia were significantly above chance level in their ability to segment words from the novel language and did not significantly differ from the group of elderly controls. Speech segmentation ability in the aphasic participants was not associated with aphasia severity although it significantly correlated with word pointing span, a measure of verbal short-term memory. Case-by-case analyses identified four individuals with aphasia who performed above chance level on the speech segmentation task, all with predominantly posterior lesions and mild fluent aphasia. Their short-term memory capacity was also better preserved than in the rest of the group.

Conclusions: Our findings indicate that speech segmentation via statistical learning can remain functional in people with chronic aphasia and suggest that this initial language learning mechanism is associated with the functionality of the verbal short-term memory system and the integrity of the left inferior frontal region.     

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving

Objectives: This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong.

Method: Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition.

Results: As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress.

Conclusion: As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.