Communication-related experiences of individuals in the early phase of semantic dementia and their families: an interview study
Abstract
Background
Semantic dementia (SD), a subtype of frontotemporal dementia, manifests as verbal symptoms, including social and behavioural deficits, associated with focal atrophy of the frontotemporal lobes. This study aimed to clarify the experiences of individuals with early-onset SD receiving speech and language rehabilitation (hereafter referred to as ‘rehabilitation’), with the intent of making it routine, as well as the experiences of their families.
Methods
Individual interviews were conducted with nine families with members who had adopted rehabilitation. Verbatim transcripts were used as data, and analyzed inductively according to the content analysis process.
Results
The family members realised the changes in the personality and behaviour of the individual with SD early, to the extent that they thought the individual with SD was different from before and were distressed by the loss of verbal communication. Nevertheless, the family members found a way to communicate by maintaining residual functions through rehabilitation and utilising their unique relationship with the individual with SD.
Conclusions
It is important to carefully explain the characteristics of the disease and the long-term significance of rehabilitation to individuals with SD and their families in the early stages of the disease.
INTRODUCTION
Cognitive abilities affecting communication, such as processing speed, memory, language, and executive function, gradually decline in individuals with dementia.1 Lewis and Riley2 stated that communication deficits contribute to behavioural and psychological symptoms of dementia (BPSD) that cause difficulties in providing care, increase caregiver stress, and strain relationships with caregivers. Therefore, recently, communication training for caregivers has improved skills, satisfaction, and BPSD;3-7 alternative communication methods have also been encouraged.8, 9
Among dementia-associated disorders, frontotemporal dementia (FTD) is characterised by progressive changes in language, personality, behaviour, and cognition.10 The Lund and Manchester groups11 described FTD as behavioural variant FTD, semantic dementia (SD), and progressive non-fluent aphasia (PNFA) depending on the distribution of atrophy in the frontal and temporal lobes. Recent studies of caregivers' experiences in the pre-diagnostic phase of FTD, including SD, have noted that caregivers struggle to recognise and understand the associated symptoms.12-14 Particularly, individuals with SD and PNFA have difficulties with verbal communication from the outset due to their illness; however, neither they nor their families receive adequate and timely professional support.15, 16 Further, Krein et al.17 cited delays in diagnosis, lack of specialist physicians, and lack of knowledge among healthcare professionals regarding language and communication disorders in dementia care. Additionally, Volkmer et al.16 indicated that individuals with primary progressive aphasia (PPA), including PNFA, are not referred to speech-language pathologists as the first step toward speech therapy. This can be attributed to the lack of evidence on the clinical effectiveness of meaningful interventions, lack of intervention guidelines, and financial burden due to the high number of young-onset cases.
Rehabilitation is concerned with stability instead of cure or recovery18 in individuals with dementia; in addition, the goal is to maintain communication as long as possible19 in those with SD.
As a rehabilitation method for language symptoms, efforts are being made to train individuals with SD to reacquire the language necessary for daily life using photo cards and drills along with whatever communication abilities they might still have.20 Evidence supporting speech therapy interventions in individuals with PPA, including PNFA, and their families is often a variable when generalising and maintaining learning outcomes.16 However, speech therapy has gradually become a worthwhile long-term intervention.21, 22
The behavioural therapy approach wherein individuals with SD establish a familiar relationship with therapists through speech and language rehabilitation (hereinafter referred to as ‘rehabilitation’) and gradually change the content as they progress is called ‘routinisation therapy’.23 It targets the stereotypical characteristics of SD and has long-term benefits including maintaining daytime activity at home or in day services, preventing apathy and other BPSD, and expecting socially desirable behaviours, thereby reducing the burden of care.24 Engaging in rehabilitation and practising its content in daily life also provides an opportunity to counteract daily communication challenges for individuals with SD and their families while being aware that they are losing their ability to understand language. However, it has not yet been confirmed whether such non-pharmacological interventions can improve daily communication or be maintained over time.25
Understanding the family's experiences and exploring their unique challenges are necessary to ensure appropriate support for caregivers.26 Therefore, this study aimed to clarify the experiences of individuals with SD receiving rehabilitation from early onset, during outpatient or home visits, and the experiences of their families through communication.
METHODS
Design
Qualitative descriptive research methods were used to examine the experiences of individuals with SD and their families in the early stages of the disease. The consolidated criteria for reporting qualitative research27 were followed.
Recruitment and participants
Since individuals with SD have difficulty with communication owing to semantic memory deficits, we selected family members with experience in caring for an individual with SD at home and a clear understanding of the situation of the primary caregiver or family members as interviewees. SD was diagnosed based on international diagnostic criteria,10 as well as the inclusion and exclusion criteria for primary aphasia.28 The early stage of SD was defined as an overall clinical dementia rating (CDR) score29 of <1 point and a score of 0 points for the memory and disorientation categories. Cognitive function at diagnosis was assessed using the Mini-Mental State Examination (MMSE).30 Owing to the low prevalence of SD and difficulty in confirming the diagnosis, it was expected that the number of participants would be small if the participants were limited only to those in the early stages of the disease, including their families. Therefore, by checking test results in medical records, we also included individuals with SD in later stages who were asked to talk about the early stages of the disease. Family members who completed end-of-life care were asked to check medical records for the period when the CDR score was <1 point and to talk about the events of that period.
Dementia specialists at the Osaka University Hospital, Ehime University Hospital, and Asakayama Hospital referred the participants, who then provided written information about the study from a physician or medical staff. The researcher contacted potential participants and explained the purpose of the study.
Procedures and data collection
Data were collected between 4 December 2018 and 26 December 2019. The interviews were semi-structured by a psychiatric nursing researcher with clinical and research expertise in individuals with SD and their families. Beforehand, each participant was given an interview guide (Table 1) and asked to talk as precisely as possible. The interview date, time, and place were decided based on the participant's preference and were conducted at home, in the university laboratory, or in a private room in an outpatient clinic where privacy could be secured. The interviews were recorded on integrated circuit recorders with the consent of the participant. The interviews were conducted once per pair and lasted for approximately 50 min.
| How do you perceive your family member's diagnosis of SD and the doctor's explanation? |
| Do you have any difficulties communicating with individuals with SD? |
| What are some of the things you are trying to do to communicate with individuals with SD? |
| What do you expect from rehabilitation? |
| How does your rehabilitation impact your daily life? |
- Abbreviation: SD, semantic dementia.
Data analysis
The data were recorded verbatim from what was reported by the participants and analyzed inductively according to the content analysis process31 using Nvivo 12 Pro (QSR International, Melbourne, Victoria, Australia). The verbatim transcripts were first read multiple times, and coding sheets were created using the contents of the transcripts about the family's verbal and nonverbal communications, including the parts of the transcripts that describe perceptions toward rehabilitation, as the units of analysis. Codes with similar semantic content were collected in subcategories depending on the context in which they were used. Subsequently, various categories were created, from the generic category to the main category, by increasing the level of abstraction (Tables S1–S3 present the analysis method).
The analysis and results were described in sufficient detail to improve the validity and reliability of the research findings. The verbatim transcripts were analyzed with the mentorship and supervision of several gerontological nursing experts with extensive experience working with individuals with SD and their families. The researcher was aware of personal experiences that might influence the research process, and the categories were created based on advice from a psychiatric nurse with expertise in qualitative research, a clinical psychologist involved in language rehabilitation for individuals with SD and their families, and a psychiatrist specialising in dementia.
Ethical considerations
This study was conducted in accordance with the ethical guidelines set out by the respective ethics committees as well as the tenets laid out in the Declaration of Helsinki. This study was approved by the Research Ethics Review Committees of the Osaka University Hospital (17480-2), Ehime University Hospital (1806013), and Asakayama Hospital. Written and oral informed consent were obtained from all participants prior to participation in the study. Participants were informed that participation in the study was voluntary and that they could withdraw from the study after consenting to participate. The participants were also informed that the interviews might psychologically burden them and that they would receive support from the researcher in such cases.
RESULTS
Participants interviewed
Twelve pairs were referred by dementia specialists. Nine pairs agreed to participate in the study: eight pairs who were currently in the early stages of the disease, and one family member who had completed end-of-life care (Table 2).
| Participant number | Family carers | Individuals with SD | Information on rehabilitation at home | |||||
|---|---|---|---|---|---|---|---|---|
| Relationship with individuals with SD | Gender | Age at diagnosis | CDR at diagnosis | MMSE at diagnosis | Contents | Frequency | Duration | |
| 1 | Daughter | F | 67 | 0.5 | 23 | Sudoku P-W practices |
Daily |
18 months |
| 2 | Husband | F | 66 | 0.5 | No data |
P-W practices | Once a month |
Not long after diagnosis |
| 3 | Husband | F | 62 | 0.5 | 21 | Sudoku P-W practices |
Daily† |
24 months |
| 4 | Cohabitant | F | 61 | 0.5 | 28 | Sudoku P-W practices |
Daily |
24 months |
| 5 | Wife | M | 73 | 1 | 9 | P-W practices | Daily |
12 months |
| 6 | Wife | M | 67 | 0.5 | 9 | P-W practices Cooking |
Daily |
10 months |
| 7 | Wife | M | 53 | 0.5 | 27 | P-W practices Drawing |
Daily | 24 months |
| 8 | Daughter | F | 65 | 1 | 25 | P-W practices Household |
Daily | 36 months |
| 9 | Husband | F | 57 | 2 | 7 | P-W practices Household |
Daily | 36 months |
- Abbreviations: Sudoku: Sudoku drills solved by individuals with SD themselves. P-W practices: Picture and word exercises such as picture naming, word-picture matching, writing picture names, and picture associations in the hospital and/or at home with or without family carers. SD, semantic dementia; CDR, clinical dementia rating; MMSE, Mini-Mental State Examination.
- † At first, she worked on her assignments daily but gradually began to do them in batches.
The average age of the individuals with SD was 63.4 years, and the average duration of rehabilitation was 20 months. For most participants, it was routine to perform rehabilitation at a fixed time every day. Conversely, in cases where they were unaccustomed, it was difficult for the participants to be involved with the person with SD at a fixed time because of several reasons, such as family members having to work. Four main categories, 11 generic categories, 26 subcategories, and 70 categories were identified based on the verbal and nonverbal communication experiences of individuals with SD in the early stages of the disease and their families. The categories generated for the communication experiences of people in the early stages of SD onset and their families are presented in Table 3.
| Main categories | Code number |
|---|---|
| Confrontation with the fact that individuals with SD are different from how they were before they developed SD | 15 |
| Loss of verbal communication causes distress to individuals with SD and their families | 13 |
| Finding ways to communicate while utilising residual functions and unique family relationships through rehabilitation | 19 |
| Lack of understanding and professional support systems for individuals with SD and their families | 23 |
- Abbreviation: SD, semantic dementia.
The families of individuals with SD accepted the fact that the individual, who seems to be a different person from before, was going to require their care. The participants felt their loved one was changing before the diagnosis. In addition, family members were forced to take care of their loved ones, whose behaviour and actions had changed owing to the disease.Main 1: Confrontation with the fact that individuals with SD are different from how they were before they developed SD
This category was aggregated from two subcategories: (i) individuals with SD who lost interest, and their speech and behaviour became patterned; and (ii) individuals with SD who felt that their personality and interpretations had become self-centred. As SD begins with verbal symptoms, individuals with SD have difficulty communicating verbally with their family, and as their social cognitive abilities decline, their personalities and behaviours seem to change to become more self-centred, thereby making it difficult for them to feel a meaningful connection with their family.Generic 1-1: Feeling that individuals with SD have different interests and interpretations of things than before
(My husband is) like a different person now than before he got sick. He says that he does not understand and that he is not good enough, and I really want him to stop saying that he does not understand. If I do not think of him as different, I cannot think of him as the same person. (#6)
This category was aggregated from two subcategories: (i) the stress of having a family member diagnosed with SD and being their caregiver; and (ii) worrying that they are the only person on whom the individual with SD can count. The shock of a loved one being diagnosed with dementia was too great for the family, and they were also experiencing stress as a result of having to care for a loved one and take care of the household simultaneously.Generic 1-2: Having no choice but to accept responsibility despite the stress of caregiving
I thought I could not do it anymore, so I thought I should go to a psychiatrist, and I got some sleeping pills and calmed down a little. (#9)
This category was aggregated from two subcategories: (i) family and friends detecting the change before diagnosis; and (ii) awareness of the change by the person with SD. It was difficult for the individuals with SD to accept they had dementia, which is characterised by loss of speech.Generic 1-3: Unacceptable changes felt by the individual and family
I think my mother had that (the painful feeling of losing words) at first. I think she felt embarrassed because she could not speak when talking with her friends, and she still says that sometimes. (#8)
The participants empathised with their loved ones and agreed that the loss of language was a painful human experience; however, they also experienced the process of gradually giving up on verbal communication and feared the impact of the loss of meaning on their daily lives.Main 2: Loss of verbal communication causes distress to individuals with SD and their families
This category was aggregated from three subcategories: (i) loss of language is difficult for us as human beings; (ii) inability to speak sometimes prevents us from speaking and communicating; and (iii) the conversation is so difficult that we feel like giving up on communication.Generic 2-1: Struggling to communicate with individuals with SD who have difficulty understanding language
(My mother) wants to know so badly and asks me about it, but even if I ask and explain, there are many things she does not understand, and I have a hard time explaining them to her. (#1)
This category consisted of subcategories, in which the loss of the meaning of words affected daily life and behaviour. They had witnessed the changes that the characteristics of the disease had caused in their daily lives, as well as those of their family members.Generic 2-2: Realising that aphasia is interfering with their daily life
For example, there is a lever that switches the shower, right? My wife does not know whether to turn it on or off; thus, she does not know what to do with the faucet, like turning off the hot water. (#2)
The participants felt that working on rehabilitation with their loved ones helped them maintain their residual language function and found unique ways to communicate with and support their family members.Main 3: Finding ways to communicate while utilising residual functions and unique family relationships through rehabilitation
This category was aggregated from two subcategories: (i) feeling that rehabilitation can help maintain function and keep track of the progression of and changes in symptoms; and (ii) feeling that caregiving is easier when rehabilitation is a stimulus for something with which the individual with SD can work on. Individuals with SD and their family members felt that rehabilitation was effective in relearning and maintaining language; family members found that care became easier when residual functions were maintained through rehabilitation.Generic 3-1: Effective use of rehabilitation
My husband would work very hard on his rehabilitation; therefore, he would make a plan and decide how many times he would do it, and I would be able to do other things during that time, such as shopping, cleaning, laundry, and housework. I would sit next to him and watch him while he studied; during that time, I could relax (#7)
This category was aggregated from two subcategories: (i) the individuals who cannot speak but can communicate what they want to say; and (ii) the individuals who are physically healthy but are not so bothered if they cannot speak. The participants routinely participated in nonverbal communication with individuals with SD through the unique relationships of their family members.Generic 3-2: Communicating without words
Even though we can no longer communicate, my wife and I are more than just words. It is just like a small child who cannot speak yet knows what you want him to do when you see him (#3).
This category was aggregated from three subcategories: (i) wanting to create an environment where individuals with SD can receive favourable stimulation; (ii) not objecting to obsessions due to symptoms unless they are very troubling; and (iii) supporting what the individuals with SD can do. Family members sought ways to communicate with their loved ones with SD that were appropriate for them, noticing and supporting their wishes and intentions and being as receptive as possible to the particulars of their illness.Generic 3-3: Respecting intentions and looking for good communication methods
For example, there is plastic garbage, and my husband would like to separate it into small pieces and put it out for garbage collection. I try not to object unless it would cause trouble for others, or I would be very embarrassed, but I do try to make a separate trash can or something like that. I will try to do that with my daughter. (#5)
The participants found that while they wanted to learn and rely on someone for matters related to SD, they found it difficult to be understood by society and medical professionals. They were resistant to using the existing long-term care insurance system services for the elderly; however, they experienced difficulty in finding the service options that they needed in the existing services.Main 4: Lack of understanding and professional support systems for individuals with SD and their families
This category was aggregated from three subcategories: (i) no expectation of medical care; (ii) no knowledge of SD, even from medical personnel; and (iii) no engagement with nurses during outpatient visits. Although they had been visiting the hospital regularly, they accepted the fact that the condition would not improve as there was no cure.Generic 4-1: No expectations from healthcare or healthcare providers
When I went to the hospital, at first, I was told that I was, you know, putting my husband in charge of the disease, and (the doctor) said that I was putting my husband in charge of the disease. He told me that it was different from dementia. (#6)
This category was aggregated from two subcategories: (i) the ideal and reality of public long-term care services are different; and (ii) there is resistance to using long-term care services for the elderly when it comes to individuals with SD. The family members of individuals with SD felt that it was difficult for others to understand the characteristics of SD that they wanted to consider when selecting and using services.Generic 4-2: Existing long-term care insurance services are not suitable for individuals with SD
They also felt that the characteristics of SD to take into account when choosing and using services were not easily understood by individuals who thought that dementia was a disease only afflicting the elderly.When I talk to them, they usually say that I should send her to a day service. No, it is not that simple. My mother definitely does not want to go to the day service because of my grandmother (who had Alzheimer's disease). I do not think my mother is ready to go to such a place. My mother is the same, and I am still a little reluctant to go to a day care centre because I think of a typical situation. (#8)
This category was aggregated from four subcategories: (i) the desire to learn and rely on SD for anything; (ii) what would have happened by now if I had not been able to talk to a nurse in an outpatient setting; (iii) the comfort of being able to see and consult in my immediate community; and (iv) concern regarding what will happen next.Generic 4-3: Seeking knowledge regarding SD and how to interact with individuals with SD
Anyway, I decided that I needed to meet people, and since I did not have any acquaintances around me, I looked for a place where I could meet people like that.
There was a nationwide association called the Alzheimer's Association Japan; hence, I went there first. Moreover, there was a non-profit organisation specialising in early-onset dementia; I went there, including the family association at this hospital. Furthermore, I went to a family meeting organised by the city's social welfare council and another meeting in which the social welfare council was involved. In total, I went to about five places. (#9)
DISCUSSION
We investigated the experiences related to communication of individuals with SD and their families who were undergoing routine rehabilitation from the early stages of the illness. Four categories were identified from the data, with the first and second categories having a clear association with the disease characteristic that the main symptoms of SD are verbal.10, 28, 32
The most important finding of this study is that families who were perplexed by the diagnosis of SD and changes caused by the symptoms of the disease began to develop their own methods of care, considering the wishes and remaining abilities of the individual with SD, in the process of routine rehabilitation. They tried to support the individual clinically presenting with SD as best as possible owing to their familial bond. Rehabilitation for individuals with SD is a process of rehabilitating the family; there has been a shift from the old method of simply increasing nominal capacity toward long-term independent family life through maintaining the interests and motivation of the individual with SD.18 Kortte and Rogalski33 stated that involving individuals with FTD, including SD, their families, and caregivers, in the rehabilitation process can ensure that everyone has the right context, understanding, and skills to enable these individuals to live as fully as possible.33 Furthermore, if individuals with SD can maintain their existing skills through rehabilitation, the burden and stress experienced by caregivers may be reduced.18 However, it is difficult for individuals with dementia and their families to understand the meaning of being diagnosed with dementia. Families need to be fully educated by healthcare professionals concerning the characteristics of the disease to avoid drawing typical conclusions.33 Therefore, one of the important roles of healthcare professionals for individuals with SD and their families is to provide a series of careful explanations to ensure they fully understand the characteristics of the disease and the long-term significance of rehabilitation through intervention from the early stages.
It was also suggested that families feel an overwhelming sense of social isolation and helplessness owing to the lack of information regarding SD and specialised medical institutions, including the inability to obtain appropriate consultation and timely support systems for their difficulties. Families of individuals with SD observe noticeable changes in personality, behaviour, and language in the early stages of the illness even before receiving a diagnosis. Nevertheless, family members continue to perform the role of a caregiver. It has been reported that caregivers of individuals with dementia who present communication difficulties experience a decrease in psychological well-being because of the loss of their relationship before dementia onset and its replacement by another relationship.2 Some studies have proposed guidance to support individuals with SD who present symptoms different from those of the more commonly known Alzheimer's disease and their families;26 however, further research is necessary. As aforementioned, previous research on FTD, including SD,33 has shown that a team-based approach to care involving various clinicians with expertise in the disease can be effective. However, many health professionals, relatives, and friends do not recognise the symptoms of the disease indicated by behavioural change or social cognitive impairment.12, 13, 34, 35 It is necessary to educate health professionals and the general public regarding the nature and causes of dementia, including neurodegenerative diseases such as SD and FTD, keep individuals with SD motivated and active, and continue to provide psychological support to family members who are confused by the changes and to respond to physical changes as needed.
Implications for clinical practice
These findings have implications for offering support services to individuals with SD and their families, an important aspect of care in a progressive disease like SD. Nurses specialising in dementia care and outpatient nurses are among the professionals who play an important role in improving SD literacy. Additionally, relationships with senior mentors who have experience caring for individuals with SD may also be useful. Further research is required for understanding the long-term effects of various types of support required from the beginning of treatment and the respective roles of multidisciplinary teams.
Limitations
The number of participants was small, and the participants were individuals who voluntarily participated, which limited our ability to obtain a diverse sample. Moreover, the study was conducted in a limited area of Japan, and the contexts of long-term care insurance services and families may differ from those in other countries.
Future directions and conclusions
Considering that changes in relationships between individuals with SD and their families occur even before diagnosis, it should be emphasised that prompt and careful intervention after diagnosis is important to support their long-term well-being. Moreover, it is also important to determine the degree and timing of intervention because even if a diagnosis is established, it is very difficult for the individual with SD and the family to accept it. Nurses are expected to have a good understanding of SD characteristics and to be able to provide support to families regarding communication methods.
Further studies on individuals with SD and their families using more diverse participants are necessary.
Acknowledgments
We would like to thank the research participants, teams, and those who supported us in the writing of this paper. Furthermore, we appreciate Editage (www.editage.com) for English language editing. This study was supported by JSPS KAKENHI (Grant Numbers 20K10974, 22K10810).
Disclosure
The authors declare they have no conflicts of interests for this article.
Open Research
DATA AVAILABILITY STATEMENT
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.
