The Demographic Changes In Malta

Published Date: 02 Nov 2017

Chapter 1

"A life that concludes without the final chapter, without the time to grow old and gain perspective, often seems bitterly incomplete but the greatest loss, the greatest dehumanisation is to grow old without possession of your mind" (Grollman & Kosik, 1996, p.xi).

I have always shown a keen interest in the phenomenon of memory loss and always wondered what it would feel like if a loved one had to lose all the memories they have had of the people they love. This has instilled in me the interest to explore what relatives of a person with dementia go through. My own personal experience played a major role in helping me choose family caregiving as the subject for this study. Although I do not have any relatives with dementia, I had a brief experience of caring for a relative. Through this, I developed an admiration for dementia family caregivers for their courage in pursuing this role with unconditional love and patience for an extended period of time. These thoughts and experiences form the rationale behind my choice of study.

Dementia is a "major predictor of mortality and morbidity in the elderly" (Scerri, Abela, & Innes, 2010, p.6). The most common form of dementia is Alzheimer’s disease. Other common forms are; vascular dementia, lewy body dementia and frontotemporal dementia. It is uncommon that an individual has only one form of dementia, since these tend to coexist in mixed forms (World Health Organisation, 2012). According to the WHO (2012), the global prevalence of individuals living with dementia in 2010 was 35.6 million. This number is expected to double by the year 2030 and triple by the year 2050 reaching a peak of 115.4 million people with dementia.

The estimated prevalence in the Maltese Islands is also expected to increase. In 2005, the number of local dementia cases was 4,072 where figures indicate there will be an estimated total number of 6,347 individuals with dementia in 2025, adding up to 2% of the population (Abela, Mamo, Aquilina, & Scerri, 2012). This increase in the number of dementia cases results in an increase in the number of dementia family caregivers.

Research aim

The research question is "what is the lived experienced of caring for a family member with dementia?" The aim of this study is to elucidate the experience of caregivers who have been or are still caring for a relative with dementia. Since this study focuses on the lived experience of family caregivers, the caregivers’ own subjective experience, perceptions and feelings are significant in order to answer my research question. Hence, I decided to use interpretative phenomenological analysis (IPA) as described by Smith, Flower and Larkin (2009) to explore how caregivers perceive and make sense of their own experience.

The conceptual framework

This research is guided by the stress model of Pearlin, Mullan, Semple and Skaff (1990). This model consists of several components that relate to family caregiving. It takes into account the background and contextual factors of the caregivers, the stressors that exert a demand on the caregivers (e.g. burden) and how these affect their well-being and quality of life (QoL). Moreover, they also discuss mediators of stress that include coping strategies and social support (as cited in Iecovich, 2008). I have decided to use this model because it takes a holistic picture of the caregiving experience by considering the caregiving process, the impacts this has on the caregivers’ QoL and the resources available to cope with such a situation.

Significance of study

As I have previously stated, the number of dementia cases in Malta is increasing, therefore the number of carers, caring for a relative with dementia will also increase. Hence, this study within its limitations will attempt to give a voice and meaning to the caregivers’ experience. It will also attempt to increase awareness about the experience of dementia family caregivers. The findings might also provide insight into the subject of dementia family care and therefore contribute knowledge for further studies.

Definition of terms

"Dementia" refers to a condition of various etiologies and forms which affect "multiple cognitive deficits that include memory impairment and at least one of the following cognitive disturbances: aphasia, apraxia, agnosia, or a disturbance in executive functioning" (American Psychiatric Association, 2000, p.148). For the purpose of clarity in this study, I will focus on caregiving of a relative with dementia who is from sixty years old or over since according to WHO (2013) this is considered to be the beginning of old age.

Overview of chapters

This chapter will be followed by a detailed account of the literature on family dementia caregiving. The rationale for the methodology employed will be discussed in chapter 3. In chapter 4, I will present the findings of the six semi-structured interviews. I will then discuss these in light of the literature review in chapter 5. In the last chapter I will give an overview of the study with its strengths and limitations. Recommendations for future research amd practice will also be discussed.

Chapter 2

Literature Review

Introduction

In this chapter I am going to present the literature on dementia family caregiving. I will highlight how in Malta, age-related issues such as dementia are becoming of a concern to society and present information on family caregivers. The process of caregiving will be outlined as the backdrop to understand issues related to negative outcomes of caregiving, QoL and mediators of stress. Issues regarding positive aspects of caregiving will also be discussed.

Demographic changes in Malta

The shift in demography has resulted in a progressive increase in the elderly population due to an increase in life expectancy (Innes, Abela, & Scerri, 2011). According to the National Statistic Office (2012) 16.3% of the population are persons aged 65 and over, an increase of 2.6% from 2005. Hence, age-related issues are becoming more significant in the Maltese society as with advancing age; severe and long-term illnesses tend to increase, requiring attention for an indefinite period of time. This happens especially when chronic conditions impact the individuals’ level of dependency, such as in the case of dementia (Triosi & Formosa, 2006).

For the people with dementia and their caregivers, the behavioural and psychological changes are the most relevant. This is because dementia impacts the individuals’ ability to live independently and autonomously (WHO, 2006). The symptoms of dementia pose a great psychological toll on family members as now they have to accept the fact that their loved one is now a patient, unable to recognise them (Grollman & Kosik, 1996). Foreign literature on caregiving amongst relatives is well documented. This experience is often described as a life changing and hardship situation, full of responsibilities (Butcher, Holkup, & Buckwalter, 2001).

In Malta, I did not find any information on the number of dementia family caregivers. Local literature on informal caregiving is documented mostly in unpublished students’ dissertations (e.g. Cilia Custo’, 2012). However, literature on family dementia care is scarce as the only research available focus on the medical aspect (Innes et al., 2011). The first local published research was made by Innes et al. (2011) where they examined the family organisation of care and caregivers’ experience with dementia.

The informal caregivers

Generally, there is one main caregiver who provides all the care for the dependent relative (D’Amato, 1995). Brodaty and Donkin (2009) indicate that females are more likely to pursue the caregiving role than males.

According to Triosi and Formosa (2006), the majority of relationships between carer and care-recipient are that of wife-husband and child-parent. D’Amato (1995) explains that since there is a higher degree of intimacy between spouses and children certain task like giving a bath are much easier for them to assume than any other relative.

Research highlights that the predominance of these dyads suggest that spouses feel obliged to live up to their marital vows and that children consider caregiving as their natural obligation and duty (Triosi & Formosa, 2006; Innes et al., 2001). Moreover, carers might also feel that the caregiving role is an opportunity to reciprocate the care provided by their relative, especially if the relative is a parent (Willoughby & Keating, 1991; D’Amato, 1995).

According to Aneshensel, Pearlin, Mullan, Zarit and Whitlatch (1995) spouses and children are at greater risk of "role captivity" (p.80), defined as the obliged feeling to be a caregiver. This does not refer to the demands of caregiving but it "exists when a person feels compelled to be and to do one thing, while preferring something else" (p.80).

Frequency of providing care

The care provided by the informal caregivers is continuous and on a daily basis (Triosi & Formosa, 2006). This is because the care-recipient is fully dependent on the carer especially in the advanced stage of dementia. In their study, Triosi and Formosa (2006) illustrate that 65.6% of the caregivers spent all day taking caring of their relative who was either bedridden and/or with dementia. The authors report that some of the interviewed carers even woke up at night to assist their relative’s needs.

The caregivers’ experience

An understanding of what caregiving entails is significant to gain insight into the caregivers’ experience throughout the progression of dementia. Qualitative studies on caregivers’ experience are limited. However, the research present is consistent with what caregivers pass through.

Witnessing changes in the relative

Experiential studies suggest that at first caregivers are uncertain about the behavioural and personality changes in their relative. Despite this, they feel reluctant to seek help. Instead they attribute these changes to something wrong within their relationship as at this stage, caregivers feel emotionally distant from their relative (Pfeiffer, 1999; Willoughby & Keating, 1991). Dupuis, Epp and Smale (2004) report that when caregivers seek medical attention, the most frustrating experience is the struggle involved in getting a proper diagnosis and when they manage, they find it hard to accept it. Shock, disbelief and horror were the most common first reactions upon hearing the diagnosis though caregivers also feel relieved because they have an explanation for their relative’s change (Kuhn, 1998; Grollman & Kosik, 1996). When caregivers decide to take up this role, the doctors either encourage or discourage them to put their relative in an institution (Cilia Custo’, 2012).

Providing care at home

During the early stages of dementia, the relative can still live autonomously. Hence the carer is more of a companion than a caregiver at this stage. As dementia progresses, the relative’s ability to communicate deteriorate making it very difficult for caregivers to understand their relative’s needs (Pfeiffer, 1999). However, Loukissa, Farran and Graham (1999) indicate that as carers grow familiar with dementia, they manage to adopt different strategies by making any form of adjustments for the sake of their relative.

Similarly, Kuhn (1998) suggests that caregivers perceive their relative’s dependency as very challenging because they have to coordinate their lifestyle to suit their relative’s needs. This results in performing activities which carers feel unbearable (Aneshensel et al., 1995). According to Butcher et al. (2001), despite the stress and frustration, caregivers still respond to their relative with a loving attitude and strive to keep things normal as much as possible.

This all-consuming role ends when caregivers acknowledge the fact that they need help. Research indicates that there is a point with dementia where carers feel unable to meet the demands of caregiving (Willoughby & Keating, 1991; Pfeiffer, 1999). Consequently, according to Willoughby and Keating (1991) caregivers decide to institutionalise their relative even though they experience feelings of helplessness and sadness because they can no longer cater for their relative. Austrom and Hendrie (1990) suggest that caregivers feel this way due to the fact that this role becomes part of their identity.

Experiencing anticipatory grief

Before the physical death of the relative, caregivers experience several losses throughout the progression of dementia such as the loss of their relative’s personality (Austrom & Hendrie, 1990). Cilia Custo’ (2012) also indicates a loss of relationship, as the carers start to perceive the relative as a child. Consequently, caregivers find it more difficult to provide care for someone who no longer retains an emotional bond (Austrom & Hendrie, 1990). Doka (2010) argues that caregivers find it difficult to deal with the behavioural and psychological manifestations of dementia as these represent the loss of their relative’s personality and hence exacerbate feelings of grief. Similarly, Holley and Mast (2010) explain that these manifestations are a predictor for anticipatory grief. The same authors state that caregivers also experience secondary losses such as the loss of one’s social life. These losses are continuous through the progression of dementia and hence "the caregivers’ grief may wax and wane, while they recycle again and again through the grief experience" (Ponder & Pomeroy, 2008, p. 15).

Caregivers’ burden

George and Gwyther (1986) define caregivers’ burden as "the physical, psychological or emotional, social and financial problems that can be experienced by family members caring for impaired older adults" (p.253). Since burden is multidimensional it can either refer to the negative consequences arising from activities of daily living or to how caregivers perceive such a situation (Braithwaite, 1992).

A study by Pierce, Ader and Peter (1989) suggests that burden is associated with the relative’s level of impairment, frequency of care and activities performed. Raccichini, Catellani, Civerchia, Fioravanti, and Scarpino (2009) indicate that spousal caregivers are the most likely to feel burdened when compared to the children of the care-recipient and females tend to experience more emotional burden than males. On the contrary, Bialon and Cole (2011) argue that both genders indicate a decline in their overall health especially if they do not have any social support.

According to Triosi and Formosa (2006) the consequences of burden generally include "depression, psychological distress, lowered life satisfaction, interpersonal conflict, social isolation and stress-related physical health complaints" (p.44). This burden does not seem to decrease even if their relative is institutionalised (Pierce et al., 1989). Martin-Cook, Trimmer, Svetlik and Weiner (2000) suggest that caregivers are able to feel less burdened when they focus on the positive feeling of fulfilling an important job.

Caregivers’ quality of life

QoL is defined as the "individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns" (WHO, 1997, p.1). According to Vellone, Piras, Venturini, Alvaro and Cohen (2012) caregivers consider family unity, autonomy, freedom, tranquillity and overall health crucial to a better QoL. The same authors indicate that caregivers express that fear of the unknown and having less time for themselves made it worse.

Impacts on work and social life

Burden affects the caregivers work and social life negatively (Iecovich, 2008; Ekwall, 2004). Triosi and Formosa (2006) indicate that although work is significant to maintain the household, the strain of work and caregiving is unbearable. A study by the National Alliance for Caregiving (2009) in the United States illustrates that when it becomes difficult for caregivers to juggle the two, a sizeable amount of caregivers (70%) report making changes such as reducing the working hours, changing job conditions or leave work altogether. The study adds that the amount of adjustments caregivers make at work is determined by how intensive the caring situation is.

According to Rogers (2001) caregivers are also deprived from the opportunity to foster relationships with others as they experience a loss of leisure and social life. One reason that the carers’ social life becomes severely impacted is due to the long hours spent caregiving. This affects their relationship with their friends/relatives as they cannot go out (Triosi & Formosa, 2006). Hence, caregivers have little opportunity to develop or maintain new social relationships. On the other hand, friends/relatives might socially marginalise them due to the lack of knowledge about the demands of dementia caregiving (Dupuis et al., 2004).

Impacts on psychological and physical health

Schulz and Beach (1999) indicate that when compared to non-caregivers, dementia caregivers are more susceptible to high levels of anxiety and depression. In fact, anxiety disorders have been found to impact one in three dementia caregivers (Akkerman & Ostwald, 2004).

Ory, Yee, Tennstedt and Schulz (2000) point out that the majority of caregivers experience physical problems. Vitaliano, Echeverria, Yi, Phillips, Young and Siegler (2005), indicate that caregivers are at an increased risk for obesity and insulin resistance. These factors have been found to be related to an increased risk of mortality amongst family caregivers (Schulz & Beach, 1999). Furthermore, when compared to non-caregivers, caregivers tend to engage in less health-promoting, self-care behaviours (Acton, 2002).

Mediators of Stress

As I already highlighted, caregivers experience many emotions whilst pursuing this role. The feelings range from denial, fear, guilt, anger, stress, depression, anxiety, burden and frustration (Grollman & Kosik, 1996; Butcher et al., 2001). To overcome these feelings, the caregivers employ their own coping strategies to deal with stress. This involves an effort to change the circumstance so as to make it more manageable (Taylor, 2009). The way caregivers handle stress influences their capacity to live a good QoL (Ekwall, 2004).

Stress models have been applied as an attempt to understand how different individuals deal with stress. The transactional model of stress by Lazarus and Folkaman (1984) indicate that the way individuals interpret a specific event or situation determines an individual’s reaction.

In this section, I am going to discuss different coping strategies employed by family dementia caregivers. Emphasis will be given to social support and spiritual coping since family and religious values are deeply ingrained in the Maltese society (Tabone, 1995).

Problem- and emotion-focused coping strategies

Problem-focused forms of coping are "directed at defining the problem, generating alternative solutions, weighting the alternatives in term of their costs and benefits, choosing among them and acting" (Lazarus & Folkman, 1984, p.152). In contrast, emotion-focused coping involves "efforts to regulate emotions experienced because of the stressful event" (Taylor, 2009, p.181).

A study by Bowd and Loss (1996) illustrate that sixty-eight caregivers dealt with the caregiving role by using both forms of strategies that include: self-reliance, independence, praying, reading and talking to their family. Strategies such as assigning blame, crying and expressing anger were the lowered rank coping strategies. This is consistent with the findings of Pierce et al. (1989) as they indicate that caregivers of a relative with dementia use both types of coping strategies. Taylor (2009) suggests that individuals who employ different coping strategies can cope better than those who always use the same type of strategy.

There are several reasons why employing both of these coping strategies is useful. Emotion-focused coping helps caregivers reappraise their situation as it gives them courage to maintain hope and optimism (Lazarus & Folkman, 1984). On the other hand by employing problem-focused coping the carers are more likely to benefit from a better psychological QoL (Pattanayak, Jena, Vibha, Khandelwal, & Tripathi, 2011). Pattanayak et al. (2011) highlight that the most beneficial coping strategy employed by caregivers was social support as it contributed to a better overall QoL.

Gaining social support

The care given by a relative is qualitatively different from the care given by a paid worker or agency. The latter is defined as the assistance provided by support groups/agencies such as the "Malta Dementia Society", whilst the former is the assistance provided by family members out of feelings of love and obligation towards their frail, elderly relative (Kaufman, Kosberg, Leeper, & Tang, 2010).

Studies illustrate that social support predicts caregivers’ burden and overall life satisfaction. This suggests that when caregivers seek social support, they are more likely to experience an increase in life satisfaction and decrease in burden (Kaufman et al., 2010; Lai & Thomson, 2011).

Caregivers living in large countries might find it difficult to gain support due to long distances. This is not the case in Malta. As Tabone (1995) explains, Maltese families live close to each other. His study indicates that 66.3% of families live in the same place as their family of origin. Another point worth noting is the importance of unity within the Maltese families. This aids the availability of social support, as Maltese families tend to share everything, especially life adversities (Tabone, 1995).

Spirituality and religious coping

Stuckey and Gwyther (2003) define ‘religion’ as a set of beliefs governed by faith and ‘spirituality’ as a "search for meaning in life" (p.291). According to Triosi and Formosa (2006), the Maltese consider the church values and spirituality as a form of support. Similarly, Stolley, Buckwalter and Koeing (1999) argue that trusting in God and prayer is an effective way for dementia caregivers to deal with their situation. This might be because religion and spirituality is perceived by the carers as a hope for the future, a source of strength, security and guidance (Stuckey & Gwyther, 2003; Snyder, 2003). According to Duggleby, Swindle, Peacock and Gosh (2011), hope predicts how caregivers perceive their overall QoL.

Caregivers’ gain

Different individuals have different ways of coping through life adversities (Lazarus & Folkman, 1984). Hence, one might be able to cope with the demands of caregiving whilst another will be unable to cope even if it is the same situation. According to Walsh (2003) "the ability to withstand and rebound from disruptive life challenges" (p.399) is known as resilience. Little information was found on resilience with relevance to dementia family caregiving. However, despite being an under researched area, I think that the concept of resilience can help explain why different caregivers gain more from their experience than others. In fact, Scott (2010) indicates that an increase in caregiver’s resilience results in a decrease in burden.

According to Kramer (1997) "caregivers gain" (p.218) refers to any positive outcome derived from being a caregiver. The concept of caregivers gain is understood in relation to positive aspects of caregiving (PAC) as it can lessen the impact of all the negative consequences that arise from caregiving (Semiatin & O’Connor, 2004). Dupius et al. (2004) report satisfaction, gratification, pride, sense of reciprocity of care, personal growth, sense of purpose and meaning as the crucial constituents of PAC. Cohen, Colantino and Vernich (2002) in their study indicate that 73% of caregivers were able to identify at least on PAC. The authors specify that positive appraisal of the situation is associated with lower burden and hence a better QoL.

Conclusion

Having reviewed relevant literature, I have gained better insight to the process of caregiving, how they cope with such a situation and the positive and negative impact which caregiving has on their overall QoL. In the following chapter, I will provide an explanation and rationale for the methodology employed in this research.

Chapter 3

Methodology

Introduction

This chapter provides a rationale for the methodology employed within this research. I am going to present information about the participants and the method of data collection. The procedure carried out for this research will be outlined throughout the aforementioned sections. A detailed explanation of how the data was analysed, will also be provided. Issues related to reflexivity, ethical considerations and academic rigour will also be discussed.

Aim and the research question

The main research question for this study is: "What is the lived experience of caring for a family member with dementia?" The purpose of this study is to explore and gain understanding of the carer’s feelings, perceptions and experience that they go through whilst caring for their relative. I am also interested in how this situation impacts their QoL and how they cope with it.

The method of inquiry

In this research the participants’ subjective experience is significant to answer the research question therefore a qualitative approach was the most suitable method to reach this aim. According to Willig (2001), this approach is concerned with how individuals interpret and experience a particular event in their life whilst at the same time aims to give a voice to experiences that are dismissed.

The methodology

For this study, I decided to use Interpretative Phenomenological Analysis (IPA) as described by Smith, Flower and Larkin (2009). In accordance with my research, IPA’s main aim is to understand how people perceive and make sense of their experience (Smith et al., 2009).

This study adopts a social constructivist perspective since this position asserts that multiple realties of an experience exist and these must be understood within an individual’s context (Creswell, 2007). The main theoretical underpinnings of IPA are phenomenology, hermeneutics and idiography. In line with my research, phenomenology is concerned with capturing the essence of this experience (Smith et al., 2009).

IPA acknowledges the research as a process where as a researcher I have an active role in this research. Hence, a double hermeneutic is involved where I, as the researcher have to make sense of the participants’ experience whilst at the same time try to understand this from their internal frame of reference (Smith & Eatough, 2007). To achieve this type of understanding, I need to be self-aware of how my biases and subjectivity can hinder the research process (Smith et al., 2009). These will be discussed in the reflexivity section.

IPA is an idiographic mode of inquiry where it is concerned with understanding and analysing a particular experience (Smith et al., 2009). This approach is suitable because I am specifically interested in the unique experience of being a dementia family caregiver.

The participants

The participants were recruited on a voluntary basis from the "Malta Dementia Society." Purposive sampling was used for this study to obtain six participants. In this type of sampling the participants were selected on the basis of criteria to ensure a fairly homogenous sample (Smith & Eatough, 2007). The eligibility criteria that was needed for the inclusion of participants in this study, is presented below:

Carers who have been or are still the caregivers of a relative with dementia who is either still living at home or has been/still living in a nursing home. The latter was included because over the years given the severity of dementia many caregivers opt to institutionalise their relative.

The caregiver had to be either the spouse or the child of the relative with dementia. The reason for this is because spouses and children of a person with dementia share a high level of emotional bond, more than any other relative. Moreover, certain activities of caregiving are much easier for them to assume than any other relative (D’Amato, 1995).

The caregivers must have been providing care for at least three years. The criterion was included because over the years caregivers might have come to terms with their situation. This could not be guaranteed. Hence, as a precaution if any of the participants needed further counselling I planned to refer them to the ‘Malta Dementia Society.’

The participants who met these eligibility criteria were contacted through a letter sent by the "Malta Dementia Society" on my behalf due to the data protection act. Those participants who were interested in having part in the research contacted me directly through phone or e-mail. Four females and two males participated in this study. Before the start of each interview, I gave the participants a consent form where I assured them about all ethical considerations which will be discussed later in this chapter.

The method of data collection: the interview approach

The interview as a research tool "allows entrance into another’s person world and is an excellent source of data" (Speziale & Carpenter, 2007, p.95). For this study I used a semi-structured interview which is the main type of data collection in IPA. In this type of interview I had a set of questions which were only used as a point of reference to guide me as a researcher (Smith & Eatough, 2007). This enabled me to ask further questions to understand better the participants’ experience as well as to ask for clarifications when necessary to ensure that their accounts were properly understood.

The interview guide (Appendix A) was prepared in light of the literature review and was constructed as outlined by Smith and Eatough (2007). All questions were constructed according to the research question. This was done cautiously to ensure that the questions were open-ended and not in any way explicit. This was done to encourage participants to talk freely about their experience, with little prompting as much as possible (Smith & Eatough, 2007).

The interview questions focused on their experience, their quality of life and ways of coping. However it was not based solely on these. Questions about their beliefs, attitudes, perceptions and feelings were also taken into consideration. Additionally, field notes were taken to record any non-verbal cues and attention was made whilst listening to the participants, for any differences in their tone of voice. This was done to capture a holistic picture and understand better their experience and feelings about what was being narrated.

The interviews were conducted over a span of two months. They took place at the participants’ homes or at their relative’s place of institution. Each interview lasted approximately seventy minutes, allowing the participant to give as much detail as possible. The interviews were carried out in Maltese since all the participants felt more comfortable to narrate in this language. The audio-recorded interviews were transcribed verbatim in Maltese. The only parts which are translated in English are those found in the write-up. These translations were done with the help of a linguist, to ensure an accurate representation of the participants’ accounts.

To help improve my interview questions, the first interview which I conducted was considered to be the pilot interview (Creswell, 2007). No significant changes were done to the main questions and hence this interview was also used in the analysis. However, I did improve my interview guide in terms of the language used because I noticed that certain questions were not properly understood.

Ethical considerations

As a researcher, it was my responsibility to employ all possible measures to ensure that no harm was done to the participants. In fact, before the start of this research, approval was obtained from the University Research Ethics Committee (UREC) and the "Malta Dementia Society" to ensure that all ethical issues were appropriately addressed (Appendix B).

An informed consent was obtained. I informed the participants about the nature of the research and that everything said was going to be used only for academic purposes. They were also assured that information collected will be held with strict confidentiality. To preserve the anonymity of each participant I used fictitious names and I changed or omitted any personal information which might disclose their identity.

Information about how the interview data was going to be collected and used was also provided. The participants were informed that the study was entirely voluntary and that they were free to withdraw from the interview without the need to provide a reason. They also had the choice not to answer any questions which they did not want to answer. They were reminded that they had the right to access, rectify and erase data concerning themselves. The above ethical considerations were explained in the information sheet (Appendix C) and consent form (Appendix D).

I was aware that talking about a close relative with dementia could cause emotional distress. Therefore, safeguards to minimise the risks were given a lot of importance. Throughout the interview I applied several communication skills learnt throughout the psychology course to help the participants feel more at ease in narrating their experience. After the interview I asked the participants how they felt talking about their experience and whether there were any instances in which they relived distress. All of them expressed that they felt comfortable talking about their experience and felt that this can be used to help others who are in the same situation.

Analysis of data

The interviews were analysed as described by Smith, Flower and Larkin (2009). The analysis was carried out in an idiographic way where I analysed each interview individually before performing a cross-case analysis of the shared themes (Smith et al., 2009). This was done to aid the analytic process of "moving from the particular to the shared and from [the] descriptive to the interpretative" (p.79).

The first step of the analysis involved reading the first transcript for several times. This was done to become familiar with the transcript and with the participant way of thinking about certain issues. The reading process was supplemented by listening to the participants’ voice and the flow of the interview. During this process I used the left hand side of the margin to write exploratory comments. Through my initial noting I focused on the descriptive component of the experience together with the meaning of the experience for the participants. The exploratory comments were transformed into emergent themes and were written on the right hand side of the margin (Smith et al., 2009). An excerpt from an analysed transcript is presented in Appendix E.

After establishing a set of themes, I listed them in a chronological order. Emergent themes that linked with each other, were grouped together to develop a cluster of related themes (Smith et al., 2009). These clusters of related themes formed the sub-ordinate themes and were incorporated within a super-ordinate theme.

This process of analysis was repeated for the other transcripts. To allow new themes to emerge from each transcript, I tried to set aside any ideas which emerged during the analysis of the previous interviews as much as possible. By looking for patterns across cases, I integrated the findings from different transcripts and produced a master table of themes, which will be presented in the results chapter (Smith et al., 2009).

Reflexivity: the researcher’s experience

According to Creswell (2007) "how we write is a reflection of our own interpretation based on the cultural, social, gender, class and personal politics that we bring to research" (p.179). Hence, as a researcher I needed to examine my biases and assumptions related to the research to increase the transparency of my findings (Speziale & Carpenter, 2007).

In the introductory chapter I outlined my rationale behind my choice of study. The first includes the curiosity behind caregiving for a relative with dementia and the second is my own personal experience with family caregiving. I used to take care of my father, whom due to an operation had to stay in bed for several months. My father is an active and hardworking person, so it was difficult for me to see him constrained in a bed. The memory of this experience is still unpleasant as I remember the frustration I felt during these months. This experience has made me realise the efforts made by caregivers who pursue this role for an indefinite period of time such as in the case of dementia caregivers.

Through self-reflection, I was aware of the biases derived from my caregiving experience and this helped me suspend my beliefs and understand better my participants from their internal frame of reference.

Rigour of the study

First, I clarified any self-biases that I had, in order to minimise the influence of my approach taken on this research (Creswell, 2007). To further enhance the credibility of my research and eliminate some of my subjectivity, I requested a peer-review. Two of my colleagues examined the data and findings. I then checked my interpretations with that of the reviewers and my analysis was consistent with theirs.

Since the participants are the experts in their own experience, I utilised another validation technique proposed by Creswell (2007), that of respondent validation. A letter (Appendix F) with the preliminary analysis of their interview was sent to some of the participants. This was done to further confirm that the data gathered was eligible to be used in my research and that it is an accurate representation of their beliefs.

Conclusion

Having provided detailed information on how the research was carried out, I have established that this process has given me insight into the caregivers’ experience. I think that by taking into consideration ethical criteria, the participants were able to feel more comfortable in sharing their experience as truthfully as possible thus compiling data which is more credible. In the next chapter, I will be presenting the findings.