Case
Abstract
This case study provides an overview of my experience of conducting interviews with people with dementia and their caregivers. The research presented here was conducted as part of my PhD which focused on caregivers’ motivations for providing care, the meaning they find in caregiving, and their relationship with the person with dementia. I was also interested in exploring the perspective of the person with dementia on these issues. To explore these topics, my PhD incorporated both qualitative and quantitative methods; this case study focuses on the qualitative study. This case study provides a brief overview of the areas my research focused on before outlining the process I went through to conduct these interviews. The case study examines some of the challenges of involving people with dementia in research and how research methodologies can be adapted to facilitate the involvement of people with dementia. This case study also explores the issues surrounding conducting interviews with both the person with dementia and the caregiver. Finally, in this case study, I provide some “tips” for conducting interviews based on my research experiences.
Learning Outcomes
By the end of this case, students should be able to
- Have a better understanding of some of the factors that can influence the caregiving experience
- Understand the processes involved in designing a research study
- Understand some of the issues around involving people with dementia in research and identify how research methods can be adapted to include people with dementia
- Understand the challenges of conducting interviews with people with dementia and caregivers
Project Overview and Context
Dementia is a progressive degenerative condition caused by diseases/disorders of the brain. People with dementia have difficulties with global cognitive functions (e.g., memory, thinking, planning, and verbal communication). Providing care for someone with dementia can be challenging particularly as the person will gradually get worse and they will need more and more help with daily activities (e.g., dressing). In this case study, I use the term caregiver to refer to informal caregivers, normally family members or friends (although I recognize that most caregivers do not see themselves as “caregivers”).
When I embarked on my PhD, the most dominant theoretical model used to explain the experience of providing care was Leonard Pearlin and colleague’s Stress Process Model (SPM). This is a model that basically conceptualizes caregiving as a stressful process and identifies that there are many factors which can influence how people adapt to and cope with caregiving. The SPM is a useful model because it acknowledges that there are different stressors associated with caregiving; for instance, the SPM distinguishes between stressors associated with the actual act of providing care from other types of “role” stressors (e.g., the caregiver may still work and have his or her own family to look after). The SPM has been very influential in research on factors that influence the well-being of caregivers; however, as I identified in my PhD, there were gaps in this model and in caregiving research in general. My PhD focused on the lesser researched areas in caregiving research: motivations to provide care, the quality of the relationship between the caregiver and person with dementia, and meaning in caregiving. When I first started my PhD, it felt as if these were very much distinct concepts; however, as my PhD progressed, it became clearer how these concepts were interlinked.
Background to the Research
My research focused on exploring motivations to provide care, relationship quality, and meaning in caregiving. Each of these could have an impact on the caregiver’s experience of caregiving and potentially his or her well-being. A brief overview of these topics is presented here.
Motivations to Provide Care
Motivations to provide care is not mentioned in the SPM, and at the time I did my PhD, very few studies had explored caregiving motivations. Yet people’s motivations for providing care could potentially have a huge impact on how they adjust to caregiving.
Why Do Caregivers Provide Care?
Most people would respond that caregivers have no choice but to provide care. However, theories on motivation indicate that caregivers could potentially have very different underlying motivations for providing care. People may be motivated by altruistic or intrinsic reasons, where the desire is to help the person with dementia. Alternatively, people may be motivated by egotistical or extrinsic motivations, which are perceived to be more self-serving reasons for providing care (e.g., to avoid feelings of guilt). The caregivers’ relationship with the person with dementia is also important as they may provide care out of feelings of “marital duty” and so on.
Relationship Quality
Caregiving can affect the relationship between the caregiver and person with dementia as they both have to adjust to changes and their altered roles (e.g., a spouse may now be the “caregiver”). The SPM identifies the perceived loss of a relationship as a stressor but this does not seem to encapsulate all the changes that occur in the relationship. Although there had been studies that have explored relationship quality, I was interested in understanding the changes occurring in the relationship.
Does the Quality of Relationship Change in Caregiving?
Equity theory proposes that in an equitable relationship, people strive to have balance between help given and help received. Liat Kulik has described how changes in this balance would create tension in the relationship. Caregiving does alter the nature of interactions within a relationship; for instance, communication is affected and the caregiver will have to take on more responsibility. Some caregivers will report negative changes in their relationship with the person with dementia, others will describe how caregiving has brought them closer to the person with dementia. For some caregivers, being able to continue their relationship with the person with dementia and provide care for him or her is one of the positive aspects of providing care.
Meaning in Caregiving
As the SPM tends to focus on the negative consequences of caregiving, this raises question of whether providing care can be a positive experience. At the time of doing my PhD, there were not many studies exploring the positive aspects of providing care. I was interested in meaning in caregiving, which has many definitions, but relates to the person deriving something positive and meaningful out of providing care. I was interested in exploring whether caregivers identified meaning in providing care.
Can Providing Care Be a Positive Experience?
Betty Kramer’s review paper identified that the positive aspects of providing care had been a neglected dimension of the caregiving experience. Yet deriving something positive out of caregiving may help caregivers to sustain caregiving. Caregiving can give people feelings of gratification and satisfaction. The meaning caregivers derive out of caregiving can also be linked to caregiving motivations; for instance, the caregiver may derive a sense of satisfaction from helping the person with dementia to remain at home and not go into full-time care.
Designing the Study
Having identified the areas, I wished to explore in my PhD and having conducted literature reviews on these topics, my next task was to develop my research project. My plan was that I would use both quantitative (questionnaires) and qualitative (interviews) data collection techniques. The reason for this was that each technique would provide differing perspectives:
- Using qualitative methods, I could explore the perspective of the person with dementia and caregivers. I could also examine how these three factors were related to and influenced each other.
- Building on the qualitative work, I could then use cross-sectional methods to explore the link between these factors and their relationship with caregiver well-being.
This case study focuses on the qualitative interviews that I conducted, which were eventually written up as two papers.
Research Practicalities: Planning the Interviews
Having decided to use qualitative methods, I then needed to design the study. At that time, my only previous experience of qualitative methods was analyzing interviews with caregivers of people with early-stage dementia (Catherine Quinn and colleagues), so while I had experience of analyzing interviews, conducting them was new to me. There were methodological issues that I needed to consider when designing the study.
Involving People With Dementia in Research
In my study, I was interested in the subjective experiences of the people with dementia and their views on the caregiver. One of the major barriers around involving people with dementia in research is the perception that as they have memory problems, the information they provide may not be reliable (as they may not have an accurate recall of events). Gill Hubbard and colleagues identified that the perspectives and subjective experiences of people with dementia had tended to be overlooked in research. This was because people with dementia were thought to be incapable of talking about their thoughts and feelings, thus making it difficult to elicit their subjective accounts. Since the 1990s, there has been a lot of research that has challenged this assumption by demonstrating that people with dementia can actively contribute to research studies. Theresa Moore and Jane Hollett have argued that concerns about the responses of people with dementia being influenced by confusion or confabulation are less of a concern if you accept that their account reflects their reality.
I needed to consider how to adapt my interview techniques for the person with dementia. Linda Beuscher and Victoria Grando suggest that it is important to recognize the impairments associated with dementia (e.g., word finding difficulties, difficulties following complex conversations) and adapt your interview techniques to facilitate this. They also recommend that when working with people with dementia, you should not contradict their statements or quiz them about specific details. If the person is repetitive or goes off topic (which can happen in any interview), it is important to acknowledge his or her viewpoint and direct the conversation back to the interview questions.
Capacity to Consent
People with dementia have memory problems and so on which will affect their ability to consent to take part in research (to consent, you have to retain the information about the study, decide whether you want to take part, and communicate this decision). For this study, I needed to include people with dementia who had capacity to consent.
Terminology
I also had to consider the terminology I used both in study documents and in the questions. One issue was around the use of the term “dementia”; not everyone uses this term to describe their condition (or accepts that they have dementia). Hanna-Mari Pesonen and colleagues recommend not using the term “dementia” unless the participant uses it. Equally, the term “caregiver” is a difficult term to use as it implies that the person’s role has shifted from a spouse/child to that of a caregiver. I felt it was important in the interviews to use terms that the participants were comfortable with.
Type of Interview and Questions
I had to consider the type of interview I wanted to conduct. I decided to conduct semi-structured interviews which would allow for some structure to the interviews but also allow me to follow up interesting topics that emerged in the interview. I also had to think about the main questions I wanted to ask the participants and the other “sub” questions which would help guide the interview. The order of the questions was also important; Elizabeth Cridland and colleagues recommend including an introductory statement at the start of the interview to re-orientate participants about the research. I also needed to have some more general questions at the start of the interview to get it going and build rapport and to ensure that the questions at the end wrapped up the interview and left the participants on a “happy” note.
Interviewing the Person With Dementia and Caregiver
I would be interviewing the person with dementia and caregiver most likely on the same day. Hanna-Mari Pesonen and colleagues have described the challenges of conducting joint interviews and trying to enable each participant to be heard as an individual. They identified that joint interviews may prevent participants from expressing thoughts and concerns. I planned to interview each participant separately, ideally without the other person being there so there were no concerns about the other person over-hearing our conversation.
From Initial Ideas to Data Collection
There were several stages I had to go through before I could start data collection:
- Write the research protocol;
- Write the interview questions;
- Write the ethics application and associated documents, for example, Participant Information Sheets, Consent forms;
- Submit the ethics application to the School of Psychology ethics board;
- Once I had approval from the University, submit the National Health Service (NHS) ethics application;
- Attend the ethics committee meeting;
- Make amendments to the application and re-submit.
Identifying Participants
Once I had received ethical approval, I then had to identify participants to take part in the study. The interview participants were to be identified from the caseload of the Admiral Nurse Service (Admiral Nurses are specialist mental health nurses for caregivers of people with dementia). I was looking for caregivers and people with mild, moderate, and severe dementia. The Admiral Nurses identified eligible participants and then I contacted them to see whether they would be interested in taking part in the study. If they were interested, I would visit them to seek their informed consent to take part in the study.
Method in Action: Conducting the Interviews
I was able to interview 12 caregivers and six people with dementia. Reasons for not interviewing the person with dementia was that they were either too impaired or had gone into full-time care. The interviews I conducted with the caregivers varied in length, from 38 to 98 min. The interviews with the person with dementia were shorter, 13 to 63 min, as the person with dementia tended to have impaired verbal communication.
My first interview was with a couple where the person with dementia had early onset dementia (dementia typically affects people aged more than 65 years). The interview with the caregiver went well but the interview with the person with dementia was more challenging as he had word finding difficulties and tended to provide very short answers to my questions. I found he was more conversant when the caregiver was there. After this interview, I realized that I would need to incorporate more questions in the interview protocol for the person with dementia that would help to guide the conversation.
My second interview presented different challenges. Before I started the interviews, I felt that it would be important to interview the person with dementia and caregiver separately. In this couple, the caregiver did not want to leave the person with dementia, making it a more challenging interview. As an interviewer, I felt uncomfortable asking questions about the quality of the relationship with the other person sitting there. I was also slightly uncomfortable about some of the comments the caregiver made about the person with dementia especially as he was sitting next to her. Although he spent most of the time staring out of the window, he did add the odd comment to his wife’s interview which indicated he was aware of what she was saying. The interview with the person with dementia was going well; however, I found that the caregiver kept stepping in to correct him which affected the flow of the interview. In subsequent interviews, I tried to make it clear that I was interested in subjective experiences and less concerned about the accuracy of facts.
The more interviews I did, the more I felt comfortable with the interview questions and so was less reliant on having to look down at my list of questions. Each interview was different, and for some, I found that the participant would go off topic and I would have to re-orientate them back to the interview questions. I was surprised at how open some of the participants were with me. Some caregivers talked about their frustrations with the person with dementia. Others described their fears for the future and what would happen when the person with dementia became very impaired. Some caregivers were resolute that they would continue caring for the person with dementia at home despite the psychological and physical toll this was taking on them. One caregiver described her guilt of putting her father in a care home as she could no longer cope with having him in the family home. The interviews helped me to both understand the concepts of relationship quality, meaning, and motivations and see how these concepts were interlinked.
What Happened Next?
In my PhD, I set about to gain a better understanding on the role of meaning, motivation, and relationship dynamics on the caregivers’ experience of caregiving. Although when I was developing the study, I had a plan for analysis, this changed after conducting the interviews. After reflecting on the content of the interviews, I decided to write them up as two separate papers. The first paper focused on the caregiver data and explored how meaning, motivation, and relationship dynamics combined to influence the subjective experience of caregiving. Through this, I identified an overarching theme of “balancing needs,” in which the caregivers struggled to balance their needs and the needs of the person with dementia. The second paper involved case studies in which I explored the perspective of six triads consisting of the caregiver, the person with dementia, and the Admiral Nurse (who I had also interviewed). This enabled me to explore similarities and differences in people’s accounts and how they all worked together.
Practical Lessons Learned
This case study has focused on my experience of conducting interviews with people with dementia and caregivers. From this experience (and subsequent experience of working on other research studies), I have developed some practical tips for working with people with dementia and caregivers. Although primarily aimed at qualitative research, some of these tips are also applicable to quantitative (e.g., administering questionnaires) research.
Arranging the Visit
- Properly prepare the person
Make sure the person is fully prepared for your visit. Explain to the person what the visit will involve (e.g., whether it is just a consent visit or whether you will want to interview him or her on the same day) and how long you will be there. People living on their own may feel more vulnerable and may want to have someone else there for the initial visit (e.g., a person with dementia living alone may wish to have a friend at the visit).
- When is the best time?
It is always best to find out from the person with dementia/caregiver when would be a good time to arrange the interview. People with dementia can suffer from sun-downing (where they can be more confused and agitated as “the sun goes down”); some may not get up till late in the morning due to having restless sleep. You want to arrange the interview for a time when they would be most alert, so ask beforehand. The caregiver may use respite services or have days when he or she goes out.
- Make sure they make a note of the time/date of the appointment
When you arrange a time and date to meet, ask whether he or she has a calendar or diary to write down the appointment, make sure that he or she writes down your name and telephone number so that he or she can call you if there is a need to cancel the visit. If possible, send a letter confirming the date and time of the visit.
Before the Visit
- Practice your interviews
Go through your questions beforehand so that you are familiar with them. Ideally pilot your interview protocol with someone beforehand.
- Check your equipment
If you are going to be recording your interviews, test out your equipment beforehand to ensure you know how to use it. Check that it can pick up on people’s voices and how sensitive the microphone is (i.e., how close does it need to be to clearly record the conversation). Make sure that the equipment is properly charged, that you have spare batteries, and so on (mine once ran out in the middle of an interview).
- Contact the participant the day before
It is important to be flexible when working with people with dementia and caregivers. People with dementia can have “bad” days where they are not functioning as well as usual. Generally, when working with people with dementia and caregivers, it is best to contact them the day before to confirm the visit as things do change. This is particularly relevant for people with dementia. This is a useful way of reminding them about the visit, as they may have forgotten, and can help avoid a wasted visit where you turn up and find they have gone out or find they have only just got out of bed (this happened to me). Make sure you have your mobile phone and the participant’s contact information on you so that you can call him or her if there is no answer at the door.
- Make sure someone knows where you are
You need to follow your University’s/health trust’s lone worker policy when visiting participants. When you are on a research visit, make sure that you leave information about where you are going (in a safe place to ensure confidentiality) and that someone knows where to find this information in an emergency. You should check-in with someone before the visit and afterwards (taking into account that visits can sometimes go on longer than anticipated). Have your mobile phone on you so that you can contact someone if there is a problem.
During the Visit
- It is important to build rapport
It is important to build rapport with the person with dementia and the caregiver so that they feel comfortable talking to you. You need to factor in some time before the interview commences so that you can have a chat with the participants. Also be aware that some people will treat a visit by a researcher as akin to having a guest around and so may have bought in or made biscuits/cakes for you. So you need to allocate an appropriate amount of time for the visit.
- Reassure participants
Before you start the interview, participants should have the opportunity to ask questions about the study. They should be given reassurance that they do not have to answer any questions they do not wish to, and they do not have to continue if they do not want to. In addition, it is important that they are made aware that these interviews will be confidential, that you will use pseudonyms in transcripts, and so on.
- Try to ensure assessment conditions are suitable for a good interview
- The interview should be conducted in a quiet, non-distracting environment. Sometimes this may mean asking for things to be changed, e.g., the television or radio being turned off or pets to be taken to another room.
- Be aware that digital voice recorders tend to pick up on everything; noises outside the room can interfere with the recording (I’ve had telephone calls, the door bell ringing, and even the sound of fire engines in the background of my interviews).
- Find out whether the participant has hearing problems before you start the interview. Does he or she need to wear a hearing aid?
- Try to place the digital voice recorder near the person but not so close that it is distracting.
- Conducting the interview
Ideally you should sit facing the person and maintain eye contact. Try to speak clearly, at your normal pace, and try to avoid long, convoluted sentences which people with dementia may find difficult to process. You should summarize and repeat important details. If the person with dementia looks confused when you ask him or her a question, check that he or she has heard you properly. Allow participants plenty of time to respond to your questions and be prepared to re-orientate them if they go off topic.
- Emotional responses to questions
It is important to be aware that participants may be experiencing a range of emotions. Every person is different and it is difficult to predict which questions will trigger an emotional response. If the participant becomes upset or tearful, you should ask him or her whether they want to take a break or wish to end the interview. The participant may discuss feeling low or depressed, if this happens, suggest that they speak to their general practitioner (GP) or suggest local support groups they could contact (this is something to consider in your ethics application). It may be useful to bring some information on local services (e.g., Alzheimer’s café and carers’ support groups) to provide to participants.
- Tiredness
Interviews can be tiring for both people with dementia and caregivers. It is important to look at body language as well as any verbal indicators of tiredness. If the participant is getting tired, this can have an impact on his or her performance and it would be better to suggest he or she has a break before you continue. You may need to end the interview and arrange to return another day.
- Be prepared to answer questions unrelated to your research
From my experience, researchers can be seen as a source of information for people with dementia/caregivers and so they will often ask you questions. I have been asked about the difference between dementia and Alzheimer’s, what causes dementia, and whether it is an inheritable condition. You may find it helpful to bring along some information with you, for instance, an Alzheimer’s Society leaflet.
- End on a positive note
It is important that interviews end on a positive note, particularly if you have been discussing emotive topics. Finishing the session with a brief, more social chat with the participant can help with this.
- How will they hear about the findings of your research?
Finally, it is very important that you tell the participant what will happen next and how they will hear about the findings of you study. Analyzing data can take a while so you need to let them know when you think you will have the findings and how you will inform them. For instance, you could send them a lay summary of the findings. In addition, you may wish to ask them for feedback on the analysis, that is, do the themes you’ve identified from the interviews reflect their experiences.
Conclusion
The benefit of conducting the interviews was that they gave me an insight into people’s experiences of dementia and the areas I was interested in. The interviews enabled me to fully explore these topics; with questionnaires, you only have a limited number of questions and response keys which may not encompass everything. The interviews I conducted enabled me to see how meaning, motivation, and relationship dynamics were interlinked and had an impact on the caregiving experience. I then built on this by conducting a quantitative cross-sectional study in which I explored how these factors were linked to the caregivers’ well-being. By exploring similarities and differences in participants’ perspectives, this also made me aware that people can have very differing viewpoints on the same topic. This relates to a wider issue on the “authenticity” of people’s accounts of their personal experiences and suggests that it is important to explore both the viewpoint of the person with dementia and caregiver. This is particularly relevant in the current study I am involved in where we are exploring how people “live well” with dementia. The research I conducted adds to the growing evidence from qualitative accounts of people’s experiences of dementia, enabling us to better understand how people live with and adjust to the condition.
Acknowledgements
My thanks go to all the participants who took the time to share their experiences with me. I gratefully acknowledge the assistance of the Admiral Nurse Service and Ted McGuinness in the recruitment of participants. My PhD research was supervised by Prof Linda Clare and Prof Bob Woods and was funded by an ESRC-CASE PhD studentship in partnership with Dementia UK. For the preparation of the case study, I would like to gratefully acknowledge the support of the Economic and Social Research Council (UK) and the National Institute for Health Research (UK) through grant ES/L001853/1 “Improving the experience of dementia and enhancing active life: living well with dementia” (Investigators: L. Clare, I. R. Jones, C. Victor, J. V. Hindle, R.W. Jones, M. Knapp, M. Kopelman, A. Martyr, F. Matthews, R. G. Morris, S. M. Nelis, J. Pickett, C. Quinn, J. Rusted, N. Savitch, J. Thom).
Exercises and Discussion Questions
- Should people with dementia take part in research studies?
- I recruited my participants from the caseload of the Admiral Nurse Service. What are the limitations of this sample?
- I used semi-structured interviews to collect data for this study. What are the pros and cons of using this methodology?
- I aimed to conduct my interviews with the person with dementia and caregiver separately. What are the pros and cons of such an approach?
- Do you think that providing care for a person with dementia can be a positive experience?
